state birth defects surveillance program directory · suggested reference: national birth defects...

STATE BIRTH DEFECTS SURVEILLANCEPROGRAM DIRECTORY

Updated May 2004

Prepared by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control andPrevention

Acknowledgement: State birth defects program directors provided the information for this directory. Their names can befound under the “contact” section of each state profile.Suggested reference: National Birth Defects Prevention Network (NBDPN). 2004. State Birth Defects Surveillance ProgramDirectory. Birth Defects Research Part A . . .

†This article is a US government work and, as such, is in the public domain inthe United States of America.Published online in Wiley InterScience (www.interscience.wiley.com).DOI: 10.1002/bdra.20071

Published 2004 Wiley-Liss, Inc.† Birth Defects Research (Part A) 70:609–676 (2004)

Birth Defects Research (Part A): Clinical and Molecular Teratology 70:609–676 (2004)

AlabamaAlabama Birth Defects Surveillance And Prevention Program (ABDSPP)

Purpose: surveillance, research, preventionPartner: university, hospital, child program, advocacyProgram status: Currently collecting dataStart year: 1995Earliest year of available data: 1998Organizational location: UniversityPopulation covered annually: 8,000/year for 1998-2000data; 18,000 for 2001 data; 19,231 for 2002 dataStatewide: No: 1998-2000 data: Mobile and Baldwincounties; 2001 data: Autauga, Baldwin, Bullock, Clarke,Coffee, Crenshaw, Dale, Elmore, Escambia, Geneva,Henry, Houston, Lowndes, Macon, Mobile, Monroe,Montgomery, and Washington counties; 2002 data: addBarbour, Butler, Pike, and Russell counties to 2001counties.Current legislation or rule: none

Case DefinitionOutcomes covered: major birth defects and geneticdisordersPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: up to one year after deliveryResidence: 1998-2000 data: Mobile and Baldwin counties;2001 data: Autauga, Baldwin, Bullock, Clarke, Coffee,Crenshaw, Dale, Elmore, Escambia, Geneva, Henry,Houston, Lowndes, Macon, Mobile, Monroe,Montgomery, and Washington counties; 2002 data: addBarbour, Butler, Pike, and Russell counties to 2001counties.

Surveillance methodsCase ascertainment: active case ascertainment,population-basedCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,obstetrics logs (i.e., labor & delivery), regular nurserylogs, ICU/NICU logs or charts, pediatric logs,postmortem/pathology logs, Congenital Anomalyreporting formPediatric & tertiary care hospitals: disease index ordischarge index, ICU/NICU logs or charts, pediatriclogs, postmortem/pathology logs, Congenital Anomalyreporting formOther specialty facilities: cytogenetic laboratories,genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in newbornperiod: any chart with a ICD9-CM code 740-759, anychart with a selected list of ICD9-CM codes outside740-759, any birth certificate with a birth defect boxchecked, �2500 Gms, all stillborn infants, all neonataldeaths, all elective abortions, all infants in NICU orspecial care nursery, all prenatal diagnosed orsuspected cases, 5 minute apgar �7

Conditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,failure to thrive, developmental delay, CNS condition (ieseizure), GI condition (ie intestinal blockage), GUcondition (ie recurrent infections), cardiovascularcondition, all infant deaths (excluding prematurity),childhood deaths between 1 and 2, ocular conditions,auditory/hearing conditions, any infant with a codabledefectCoding: California’s coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Clipper

Data AnalysisData analysis software: SPSS, MS Access, Hypercube;Excel pivot tablesQuality assurance: re-abstraction of cases, double-checking of assigned codes, comparison/verificationbetween multiple data sources, clinical review, timelinessData use and analysis: baseline rates, rates bydemographic and other variables, time trends, needsassessment, service delivery, referral, grant proposals,education/public awareness, prevention projects

FundingFunding source: CDC grant 80%, University 20%

OtherWeb site: www.usouthal.edu/genetics/Additional information on file: Birth Defects Syndromesfact sheetsComments: Site linked to International Birth DefectInformation Systems.

Contact(s)Wladimir Wertelecki, MDDirectorAlabama Birth Defects Surveillance and PreventionProgramCCCB room 214, 307 University BoulevardMobile, AL 36688Phone: 251-460-7505; Fax: 251-461-1591E-mail: [email protected]

610 STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY

Birth Defects Research (Part A) 70:609–676 (2004)

Peg Hilliard, BSNCoordinatorAlabama Birth Defects Surveillance and PreventionProgramCCCB 214, 307 University BoulevardMobile, AL 36688Phone: 251-460-7692; Fax: 251-460-7684E-mail: [email protected]

611STATE BIRTH DEFECTS SURVEILLANCE PROGRAMS DIRECTORY


AlaskaAlaska Birth Defects Registry (ABDR)

Purpose: surveillancePartner: Department of Health, hospital, nursing,environment, child programProgram status: Currently collecting dataStart year: 1996Earliest year of available data: 1996Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 10,000Statewide: yesCurrent legislation or rule: 7 AAC 27.012Legislation year enacted: 1996

Case DefinitionOutcomes covered: ICD-9 Codes 237.7, 243, 255.2, 277,279, 282, 284.0, 331, 334, 335, 343, 359, 362.74, 740-760,760.71Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater)Age: Birth to age one; Birth to age six for alcohol relatedbirth defects (including fetal alcohol syndrome)Residence: Alaska residents

Surveillance methodsCase ascertainment: passive case ascertainment,population-based; active case ascertainment for alcoholrelated birth defects (including fetal alcohol syndrome)Case finding/identification sources:Vital records: birth certificates, fetal death certificatesOther state based registries: programs for childrenwith special needs, newborn biochemical screeningprogram, Infant Learning Programs, Genetics Clinics,Specialty Clinics (Heart, Cleft Lip/Palate,Neurodevelopmental), MIMR (FIMR), Public HealthNursingDelivery hospitals: Reports are generated by the healthinformation management departments, within hospitalsand health care facilities, for any child treated ordiagnosed with a reportable ICD-9 code.Pediatric & tertiary care hospitals: Reports aregenerated by the health information managementdepartments, within hospitals and health care facilities,for any child treated or diagnosed with a reportableICD-9 code.Third party payers: Medicaid databases, Indian healthservicesOther specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newbornperiod: any chart with selected defects or medicalconditions ie abnormal facies, congenital heart disease,Any chart with an ICD-9 code of 760.71 or 742.1 andother birth defects as selected for review by the ABDRProgram Manager.Conditions warranting a chart review beyond thenewborn period: all infant deaths (excluding prematurity)Coding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformation

Data Collection Methods and StorageDatabase storage/management: MS Access

Data AnalysisData analysis software: Epi-Info, SPSS, SAS, MS Access,ExcelQuality assurance: validity checks, re-abstraction ofcases, comparison/verification between multiple datasources, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, observed vs expected analyses,epidemiologic studies (using only program data),identification of potential cases for other epidemiologicstudies, needs assessment, service delivery, grantproposals, education/public awareness, preventionprojects

System IntegrationSystem links: final birth fileSystem integration: The ABDR is in the process ofdeveloping a system to match birth defects data to datahoused in the Special Needs Services Unit (whichadministers programs such as Specialty Clinics, InfantLearning Programs, and Genetics Clinics) to assist withidentifying gaps in services and referrals for childrenwith birth defects.

FundingFunding source: CDC grant 100%

OtherWeb site: http://www.akepi.org/mchepi/ABDR/default.stmSurveillance reports on file: Family Health Datalines,ABDR Surveillance Updates, MCH Fact Sheets (ex: FolicAcid Knowledge and Use in Alaska), Alaska Maternaland Child Health Data Book 2003Procedure manual available: yesAdditional information on file: Results of the AlaskaFolic Acid Surveys conducted in 1999 and 2000

Contact(s)Janine Schoellhorn, MS, MPHMCH EpidemiologistMCH EpidemiologyUnit ; Section of Epidemiology3601 C Street, Suite 934P.O. Box 240249Anchorage, AK 99524-0249Phone: 907-269-3442; Fax: 907-269-3493E-mail: [email protected]



Sharilyn Mumaw, BBA, BEDABDR Data ManagerMCH Epidemiology Unit; Section of Epidemiology3601 C Street, Suite 540PO Box 240249Anchorage, AK 99524-0249Phone 907-269-3443; Fax 907-269-3493E-mail: [email protected]



ArizonaArizona Birth Defects Monitoring Program (ABDMP)

Purpose: surveillance, service, preventionPartner: Department of Health, university, hospital,nursing, child program, advocacyProgram status: Currently collecting dataStart year: 1986Earliest year of available data: 1986Organizational location: Department of Health(Epidemiology/Environment), Bureau of Public HealthStatistics/Office of Health RegistriesPopulation covered annually: 90,783 in 2003Statewide: yesCurrent legislation or rule: statute: ARS sec. 36-133.rule: Title 9, Chapter 4, Articles 1 and 5, Adoptedeffective 1991.Legislation year enacted: 1988

Case DefinitionOutcomes covered: 44 composite categories covering themajor birth defects and genetic diseases, as defined bythe BPA/MACDP codesPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater; All gestational ages/birth weightsincluded starting with 2002 data.), elective terminations(20 weeks gestation and greater)Age: up to one year after delivery. If the nature of adefect diagnosed in the first year of life is more preciselydiagnosed later in the child’s life, and this information iscontained in the chart at the time of our review (whichoccurs 2 -4 years after the child’s birth or fetal death),then the more precise diagnosis is used.Residence: in-state birth to state resident.

Surveillance methodsCase ascertainment: active case ascertainment,population-basedCase finding/identification sources:Vital records: birth certificates, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn biochemical screening program,Cases are identified through Children RehabilitationServices Clinics and the Newborn Intensive CareProgram, which are both in the Office for Children withSpecial Health Care Needs.Delivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logs, postmortem/pathology logs,ultrasound reports, cytogenetic reports, stillborn logs,mother’s charts for stillbornsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,ultrasound reports, cytogenetic reports, stillborn logs,mother’s charts for still bornsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in newbornperiod: any chart with a ICD9-CM code 740-759, anychart with a selected list of ICD9-CM codes outside740-759, any chart with selected procedure codes, anychart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, all stillborninfants, all neonatal deaths, all prenatal diagnosed orsuspected casesConditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Oracle

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, grant proposals, education/publicawareness, prevention projects

FundingFunding source: general state funds 25%, MCH funds 3%,genetic screening revenues 22%, CDC grant 50%

OtherWeb site: www.hs.state.az.us/phs/phstats/bdr/index.htmSurveillance reports on file: Annual Reports, 1986through 1997.Procedure manual available: yesAdditional information on file: procedures manual, copyof legislation, case record form, case finding log,abstraction forms, quality assurance procedures.Comments: Contact person 3: Bichtram Nguyen,Epidemiologist, Arizona Department of Health Services,150 North 18th Avenue, Ste. 550, Phoenix, Arizona,85007; Phone: 602-364-1302; FAX: 602-542-7447; E-mail:[email protected].



Contact(s)Timothy J. Flood, MDMedical Director, Arizona Department of HealthServices150 North 18th Ave., Ste. 550Phoenix, AZ 85007Phone: 602-542-7331; Fax: 602-364-0082E-mail: [email protected]

Allison K. Varga, RNProgram Manager, ABDMPArizona Department of Health Services150 North 18th Ave., Ste. 550Phoenix, AZ 85007Phone: 602-542-7335; Fax: 602-542-7447E-mail: [email protected]



ArkansasArkansas Reproductive Health Monitoring System (ARHMS)

Purpose: surveillance, research, preventionPartner: Department of Health, university, hospital,advocacy, legislatorProgram status: Currently collecting dataStart year: 1980Earliest year of available data: 1980Organizational location: University, Arkansas Children’sHospitalPopulation covered annually: 37,000Statewide: yesCurrent legislation or rule: Senate Bill Act 214Legislation year enacted: 1985

Case DefinitionOutcomes covered: major structural birth defectsPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: two years after deliveryResidence: in and out of state births to state residents

Surveillance methodsCase ascertainment: active case ascertainment,population-basedCase finding/identification sources:Vital records: birth certificatesDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,specialty outpatient clinicsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), genetic counseling/clinical geneticfacilities, maternal serum screening facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected procedure codes, any birth certificatewith a birth defect box checked, all stillborn infants, allelective abortionsConditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: CDC coding system based on BPA, ModifiedCDC and NBDPS coding system

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenataldiagnostic information, family history

Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history


Data AnalysisData analysis software: SAS, MS Access, STATAQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, clinical review,timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, epidemiologic studies (using only program data),identification of potential cases for other epidemiologicstudies, grant proposals, education/public awareness,prevention projects

System IntegrationSystem links: final birth fileSystem integration: no

FundingFunding source: general state funds 100%

OtherWeb site: www.ARbirthdefectsresearch.uams.eduSurveillance reports on file: Annual reports

Contact(s)Bridget S. Mosley, MPHEpidemiologistArkansas Center for Birth Defects Research andPrevention11219 Financial Center Parkway,Financial Park Place, Suite 250Little Rock, AR 72211Phone: 501-364-8951; Fax: 501-364-5107E-mail: [email protected]

Charlotte A. Hobbs, MD, PhDAssociate Professor of PediatricsSection Chief, Birth Defects ResearchUAMS College of MedicineArkansas Center for Birth Defects Research & Prevention11219 Financial Centre Parkway, Suite 250Little Rock, AR 72211Phone: 501-364-5000; Fax: 501-364-5107E-mail: [email protected]



CaliforniaCalifornia Birth Defects Monitoring Program (CBDMP)

Purpose: surveillance, researchPartner: Department of Health, universityProgram status: Currently collecting dataStart year: 1983Earliest year of available data: 1983Organizational location: Occupational andEnvironmental Disease Control, March of Dimes undercontract with the State Department of Health Services,Environmental and Occupational Disease Control.Population covered annually: 60,000Statewide: No: The Program currently monitors asampling of California births that are demographicallysimilar to the state as a whole and whose birth defectsrates and trends have been reflective of those throughoutCalifornia. Furthermore, the Program has statutoryauthority to conduct active surveillance anywhere in thestate when warranted by environmental incidents orconcerns.Current legislation or rule: Health and Safety Code,Division 102, Part 2, Chapter 1, Sections 103825-103855,effective 1982, recodified 1996.Legislation year enacted: 1982

Case DefinitionOutcomes covered: Serious structural birth defects,primarily encompassed within ICD codes 740-759.Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminations (20 weeksgestation and greater)Age: one yearResidence: In-state births to residents of 1 of 8 counties.Does not include births in military hospitals.

Surveillance methodsCase ascertainment: Active case ascertainment,population-basedCase finding/identification sources:Delivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logs, postmortem/pathology logs,surgery logsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,surgery logs, laboratory logsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected procedure codes, any chart withselected defects or medical conditions ie abnormal facies,

congenital heart disease, all stillborn infants, all neonataldeaths, all elective abortions, all prenatal diagnosed orsuspected cases, Apgar 0-0Conditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,cardiovascular condition, all infant deaths (excludingprematurity), ocular conditions, any infant with acodable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name,address, date-of-birth, etc.), demographicinformation (race/ethnicity, sex, etc.), birthmeasurements (weight, gestation, Apgars, etc.), testsand procedures, infant complications, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, familyhistoryFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: FoxPro

Data AnalysisData analysis software: SASQuality assurance: validity checks, re-abstractionof cases, double-checking of assigned codes,comparison/verification between multiple datasources, clinical review, Validity checks are done onall abstracts.Data use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, service delivery, grant proposals, education/public awareness

System IntegrationSystem links: final birth file

FundingFunding source: general state funds 34%, MCH funds20%, CDC grant 20%, other federal funding 16%, DHS/UC Pass through 10%

OtherWeb site: www.cbdmp.orgSurveillance reports on file: Current data on web site.Procedure manual available: yesAdditional information on file: Publications Index,summaries of research findings, Collaboration Protocol,Confidentiality Procedures, Cluster InvestigationProtocol, statutes, video.



Contact(s)Mary Jo CampodonicaData DirectorCalifornia Birth Defects Monitoring Program1917 Fifth StreetBerkeley, CA 94710-1916Phone: 209-384-8388; Fax: 510-549-4175E-mail: [email protected]

Gary M. Shaw, DrPH, MPHResearch Director/Senior EpidemiologistCalifornia Birth Defects Monitoring Program1917 Fifth StreetBerkeley, CA 94710-1916Phone: 510-549-4155; Fax: 510-549-4175E-mail: [email protected]



ColoradoColorado Responds To Children With Special Needs: Colorado (CRCSN)

Purpose: surveillance, service, preventionPartner: Department of Health, university, environment,child program, advocacyProgram status: Currently collecting dataStart year: 1988Earliest year of available data: 1989Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 68,420 (2002)Statewide: yesCurrent legislation or rule: Colorado Revised Statutes(CRS) 25-1.5-101 – 25-1.5-105Legislation year enacted: 1985

Case DefinitionOutcomes covered: Structural birth defects, genetic andselected metabolic conditions; selected developmentaldisabilities; very low birth weight (less than 1500 grams);others with medical and maternal risk factors fordevelopmental delayPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater, anygestational age, selected diagnoses made prenatally areascertained)Age: up to the 3rd birthday (up to the 7th birthday forfetal alcohol syndrome)Residence: events occurring in-state or out-of-state toColorado residents

Surveillance methodsCase ascertainment: Passive, population-based, multiplesources; active for selected data sources, and for specialprojects like fetal alcohol syndromeCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesOther state based registries: newborn hearingscreening program, newborn biochemical screeningprogramDelivery hospitals: disease index or discharge index,postmortem/pathology logs, selected postmortempathology sitesPediatric & tertiary care hospitals: disease index ordischarge index, postmortem/pathology logs, specialtyoutpatient clinics, selected postmortem pathology sitesThird party payers: Medicaid databasesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:prenatal to age 3: 18 selected conditions for CUSUMstatistical trends monitoring, selected death and fetaldeaths, and fetal alcohol syndrome; plus all active caseascertainment data sources (postmortem pathology andspecialty clinics.Coding: ICD-9-CM, Extended code utilized to describesyndromes and further specify condition

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SAS, ArcView (GIS software),MaptitudeQuality assurance: validity checks,comparison/verification between multiple datasources, timeliness, data audits performed forproblematic conditions; clinical review performedwhen necessaryData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and othervariables, monitoring outbreaks and clusterinvestigations, time trends, time-space cluster analyses,capture-recapture analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, needs assessment, referral,grant proposals, education/public awareness,prevention projects, environmental studies

System IntegrationSystem links: final birth file, Newborn Hearing Screeningand Newborn Genetic Screening

FundingFunding source: general state funds 15%, MCH funds15%, CDC grant 60%, other federal funding 10%

OtherWeb site: http://www.cdphe.state.co.us/dc/crcsn/crcsnhome.aspProcedure manual available: yesAdditional information on file: CRCSN Reference Guide;CRCSN Community Notification and Referral ProgramSite Manual; Fact sheets (available on web site)

Contact(s)Margaret Schonbeck, BS, MSPH(c)Program ManagerCRCSN4300 Cherry Creek DriveDenver, CO 80246-1530Phone: 303-692-2636; Fax: 303-782-0904E-mail: [email protected]



Lisa Ann Miller, MD, MSPHMedical DirectorColorado Responds to Children with Special Needs4300 Cherry Creek DrDenver, CO 80246-1530Phone: 303-692-2663; Fax: 303-782-0904E-mail: [email protected]



ConnecticutConnecticut Birth Defects Registry (CTBDR)

Purpose: surveillance, service, prevention, Reporting forMCH Block GrantPartner: hospital, child program, advocacyProgram status: Currently collecting dataStart year: 2002Earliest year of available data: to be determinedOrganizational location: Department of Public Health(Maternal and Child Health)Population covered annually: 45,000Statewide: yesCurrent legislation or rule: Sec. 19a-56a. (Formerly Sec.10a-132b). Birth defects surveillance program.; Sec. 19a-54. (Formerly Sec. 19-21a). Registration of physicallyhandicapped children. Sec. 19a-53. (Formerly Sec. 19-21).Reports of physical defects of children.Legislation year enacted: Sec. 10a-132b: 1991; Sec. 19-21a:1949 Sec. 19-21: 1949.

Case DefinitionOutcomes covered: All major structural birth defects;biochemical, genetic and hearing impairment throughlinkage with Newborn Screening System; any conditionwhich places a child at risk for needing specializedmedical care (i.e., complications of prematurity, cancer,trauma, etc.) ICD-9 codes 740 thru 759.9 and 760.71Pregnancy outcome: live births (all gestational ages andbirth weights, PDA GE to 2500 gms birth weight)Age: up to one year after delivery for birth defectsResidence: in and out of state births to state residents

Surveillance methodsCase ascertainment: Passive, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, inpatient hospitalizations,ambulatory surgery and emergency room visitsOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,reports from health care professionals in newbornnurseries and NICUs.Pediatric & tertiary care hospitals: disease index or dischargeindex, reports from health care professionals in pediatricinpatient and outpatient services planned for future.Midwifery facilities: YesOther sources: physician reports, mandatory reporting byhealth care providers and facilities; CSHCN Programs;Newborn Screening System (for genetic disorders andhearing impairment).

Case AscertainmentConditions warranting chart review in newborn period:any chart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, cases frombirth admissions where the reporting form is the solesource of case ascertainment; cases of multiple anomalieswithout a specified syndrome; cases where diagnoses arequalified as ’preliminary’ or ’rule-out’;all cases ofchromosomal anomalies lacking confirmation by

karyotype, and a 10% random sample, stratified on birthhospital, of all obvious birth defects that were notreported from birth admission but documented frompediatric reports or in the CHIME database.Coding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, prenatal care, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.)


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks,comparison/verification between multiple data sources,data/hospital audits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, needs assessment, service delivery, referral, grantproposals, education/public awareness, preventionprojects, provider education


FundingFunding source: MCH funds 100%

OtherWeb site: noneSurveillance reports on file: noneProcedure manual available: yesAdditional information on file: none

Contact(s)Martha OkaforDivision DirectorFamily Health Division410 Capitol Ave. MS #11FHDHartford, CT 06134Phone: 860-509-8066; Fax: 860-509-7720E-mail: [email protected]

Chunfu Liu, MSc, MPHEpidemiologist IIIConnecticut Department of Public Health, Family HealthDivision410 Capitol Avenue, MS #11MATHartford, CT 06134Phone: 860-509-7765; Fax: 860-509-7720E-mail: [email protected]



DelawareDelaware Birth Defects Surveillance Project

Purpose: surveillance, preventionPartner: hospital, child programProgram status: Currently collecting dataOrganizational location: Department of Health andSocial Services, Division of Public Health, CommunityHealth Care AccessPopulation covered annually: 11,046Statewide: yesCurrent legislation or rule: House Bill No. 197, an act toamend Title 16 of the Delaware Code relating to Birth DefectsLegislation year enacted: 1997

Case DefinitionOutcomes covered: Birth Defects Registry - All birthdefects for passive surveillance, selected birth defects foractive surveillance, developmental disabilities if due to abirth defect, selected metabolic defects, genetic diseases,infant mortality, congenital infectionsPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (greater than 20 weeks)Age: Birth to 5 yearsResidence: In-state and out-of-state birth to state resident,and in-state birth to state non-resident.

Surveillance methodsCase ascertainment: Active and passive surveillance,population-based, Hospital discharge records/dataCase finding/identification sources:Vital records: birth certificates, death certificates,Hospital discharge records/dataOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registry,AIDS/HIV registryDelivery hospitals: disease index or discharge indexPediatric & tertiary care hospitals: disease index ordischarge index

Case AscertainmentCoding: ICD-9-CM, six-digit modified BPA/ICD-9 codes

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), infant complicationsMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, prenatal care, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageDatabase storage/management: electronic birth certificate

Data Analysis

Data use and analysis: baseline rates, time trends, time-space cluster analyses, observed vs expected analyses,needs assessment

System IntegrationSystem links: Link to Newborn ScreeningSystem integration: Initial check into Newborn Screeningrecords with a link which pulls info to Birth DefectsRegistry from Newborn Screening system.

OtherWeb site: None at present time

Contact(s)JoAnn Baker, MSN, FNPDirector, Family Planning ProgramDE Division of Public HealthP. O. Box 637Dover, DE 19903Phone: (302) 744-4554; Fax: (302) 739-6653E-mail: [email protected]

Betsy VossCoordinator, Birth Defects and Newborn ScreeningDE Division of Public HealthP.O. Box 637Dover, DE 19903Phone: (302) 744-4909; Fax: (302) 739-6653E-mail: [email protected]



District of ColumbiaDistrict Of Columbia Birth Defects Surveillance And Prevention Program (DC BDSPP)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital, childprogram, advocacyProgram status: Currently collecting dataStart year: 603Earliest year of available data: 2003Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 15000 (approximately halfare to District residents)Statewide: yes

Case DefinitionOutcomes covered: major birth defects and geneticdisorders.Pregnancy outcome: live births (all gestational agesand birth weights), fetal deaths—stillbirths,spontaneous abortions, etc. (20 weeks gestation andgreater, �500gm)Age: Up to one year after birth except in the case of FetalAlcohol Syndrome which is up to six years.Residence: State resident at the time of diagnosis

Surveillance methodsCase ascertainment: combination of active and passive,population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logsPediatric & tertiary care hospitals: dischargesummaries, ICU/NICU logs or charts, specialtyoutpatient clinicsThird party payers: Medicaid databasesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), genetic counseling/clinical geneticfacilities, maternal serum screening facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, all stillborninfants, all neonatal deaths, all infants in NICU or specialcare nursery, all prenatal diagnosed or suspected cases,ICD9-CM 740-741.9, 742.3, 743.1, 744-748.5, 749-749.25,750-751.6, 758-758.2, 760.71, 389, 243, 270.1, 270.3,271.1, 282.2, 282.4-.63, 282.69, 282.7Conditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,developmental delay, all infant deaths (excludingprematurity), auditory/hearing conditions, any infantwith a codable defectCoding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: Oracle

Data AnalysisData analysis software: Epi-Info, SPSS, SASQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, time-space cluster analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), needs assessment, service delivery, referral, grantproposals, education/public awareness, preventionprojects

System IntegrationSystem links: state registry, final birth file

FundingFunding source: MCH funds 15%, CDC grant 80%

Contact(s)Deneen Long-WhiteChief, Data Collection and Analysis DivisionDC Department of Health, Maternal and Family HealthAdministration825 N. Capitol Street, NE, Room 3181Washington, DC 20002Phone: (202) 442-9343; Fax: (202) 442-4828E-mail: [email protected]

Joyce Brooks, MSW, LICSWChief, Children With Special Health Care Needs DivisionDC Department of Health, Maternal and Family HealthAdministration825 North Capitol Street, NE Room 3106Washington, DC 20002Phone: (202)727-7540; Fax: (202)727-7789E-mail: [email protected]



FloridaFlorida Birth Defects Registry (FBDR)

Purpose: surveillance, research, service, prevention,Educate health care professionalsPartner: Department of Health, university, hospital,environment, child program, advocacy, legislator, federaland state agenciesProgram status: Currently collecting dataStart year: 1998Earliest year of available data: 1996Organizational location: Department of Health(Epidemiology/Environment), Florida Department ofHealth, Bureau of Community Environmental Health,UniversityPopulation covered annually: 205,580 in 2002Statewide: yesCurrent legislation or rule: Section 381.0031(1,2) F.S.,allows for development of a list of reportable conditions.Birth defects were added to the list in July 1999.

Case DefinitionOutcomes covered: Major structural malformations andselected genetic disordersPregnancy outcome: live births, fetal deaths—stillbirths,spontaneous abortions, etc. (20 weeks gestation andgreater)Age: until age 1Residence: Florida

Surveillance methodsCase ascertainment: Population-based, passive caseascertainmentCase finding/identification sources:Vital records: birth certificates, matched birth/death file,fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registryDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs or chartsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logsThird party payers: Medicaid databases, healthmaintenance organizations (HMOs)Other sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with selected procedure codes, any chart withselected defects or medical conditions ie abnormal facies,congenital heart diseaseConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,CNS condition (ie seizure), GI condition (ie intestinalblockage), auditory/hearing conditionsCoding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,

gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Excel

Data AnalysisData analysis software: SPSS, SAS, MS Access, ExcelQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: state registry

FundingFunding source: general state funds 70%, CDC grant 30%

OtherWeb site: http://flbdr.hsc.usf.eduSurveillance reports on file: 1996 Annual Report, NeuralTube Defects Report, Data Quality Assurance Report,Active Surveillance Report, WebsiteProcedure manual available: yesAdditional information on file: Grants, progress reports,educational and health promotion materials, and videotapes

Contact(s)Jane A. Correia, BSEnvironmental Specialist IIIFlorida Department of Health4052 Bald Cypress Way, Bin A08Tallahassee, FL 32399-1712Phone: 850-245-4444, ext. 2198; Fax: 850-922-8473E-mail: [email protected]

Eric Grimm, MPABurea ChiefFlorida Department of Health4052 Bald Cypress Way, Bin A08Tallahassee, FL 32399-1712Phone: 850-245-4115; Fax: 850-922-8473E-mail: [email protected]



GeogiaCenters for Disesase Control and Prevention, Metropolitan Atlanta Congenital Defects Program (MACDP)

Purpose: surveillance, research, servicePartner: university, hospitalProgram status: Currently collecting dataStart year: 1967Earliest year of available data: 1968Organizational location: CDC, National Center on BirthDefects and Developmental DisabilitiesPopulation covered annually: 50746Statewide: No: Births to mothers residing within one offive counties in the metropolitan Atlanta area of the stateof GeorgiaCurrent legislation or rule: State Laws Official GeorgiaCode Annotated (OCGA) 31-12-2

Case DefinitionOutcomes covered: Major structural or genetic birthdefectsPregnancy outcome: live births (��20 weeks), fetaldeaths—stillbirths, spontaneous abortions, etc. (20 weeksgestation and greater), elective terminations (less than 20week gestation, 20 weeks gestation and greater)Age: Before 6 years of ageResidence: Births to mothers residing in one of fivemetropolitan Atlanta counties

Surveillance methodsCase ascertainment: Active case ascertainment;population-based; Combination of active and passivecase ascertainment for cases ascertained only at perinataloffices.Case finding/identification sources:Vital records: birth certificates, fetal death certificatesDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logs, postmortem/ pathology logs,Induction logs and miscarriage logsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summariesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with a CDC/BPA code, any chart with selecteddefects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checked, birth weight � 2500 grams or �36weeks gestation, all stillborn infants, all neonatal deaths,all elective abortions, all infants with low APGAR scores,all infants in NICU or special care nursery, all prenataldiagnosed or suspected casesConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,failure to thrive, CNS condition (ie seizure), GI condition(ie intestinal blockage), cardiovascular condition, ocularconditions, auditory/hearing conditions, any infant witha codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenataldiagnostic information, pregnancy/deliverycomplications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: Epi-Info, Mainframe

Data AnalysisData analysis software: SPSS, SAS, MS AccessQuality assurance: validity checks, double-checking ofassigned codes, data/hospital audits, clinical review,timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, servicedelivery, prevention projects


FundingFunding source: other federal funding 100%

OtherWeb site: www.cdc.gov/ncbddd/bdSurveillance reports on file: numerous reports andbibliographyProcedure manual available: yesAdditional information on file: rate tables by defect by yearComments: For surveillance reports and other informationregarding the MACDP, e-mail [email protected].

Contact(s)Leslie A. O’Leary, PhDManaging Director, MACDPCenters for Disease Control and Prevention1600 Clifton Rd., MS E-86Atlanta, GA 30333Phone: 404-498-3808; Fax: 404-498-3040E-mail: [email protected]

Janet D. Cragan, MDMedical Director, MACDPCenters for Disease Control and Prevention1600 Clifton Rd., MS E-86Atlanta, GA 30333Phone: 404-498-3807; Fax: 404-498-3040E-mail: [email protected]



GeorgiaGeorgia Birth Defects Reporting And Information System (GBDRIS)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital,advocacyProgram status: Currently collecting dataStart year: 2003Earliest year of available data: 2003Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 133,000Statewide: yesCurrent legislation or rule: Birth defects are reportableunder State Laws Official Code of Georgia Annotated(OCGA) 31-12-2 and 31-1-3.2 which mandate thereporting of notifiable diseases and newborn hearingscreening, and Chapters 290-5-3-.02 and 290-5-24 of theRules of DepartmentLegislation year enacted: Updated in 2003

Case DefinitionOutcomes covered: Major birth defects,genetic diseases,FAS and CPPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: Up to 6 years of ageResidence: In and out of state births to state residents

Surveillance methodsCase ascertainment: passiveCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,discharge summariesPediatric & tertiary care hospitals: disease index ordischarge index, discharge summariesThird party payers: Medicaid databasesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with selected defects or medical conditions ieabnormal facies, congenital heart diseaseCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.)


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,epidemiologic studies (using only program data), servicedelivery, grant proposals, education/public awareness

System IntegrationSystem links: state registry, final birth fileSystem integration: Newborn Surveillance and TrackingSystem (NSTS) is under development. Will integratemultiple children health systems including birth defects,UNHS, NBS and Children 1st.

FundingFunding source: general state funds 60%, other federalfunding 40%

OtherWeb site: http://health.state.ga.us/epi/mch/publications.shtmlProcedure manual available: yes

Contact(s)Debra L. Hersh, MPHGBDRIS CoordinatorGA Division of Public Health, MCH EpidemiologySection2 Peachtree St., NW Suite 14-404Atlanta, GA 30303Phone: 404-651-5131; Fax: 404-657-7517E-mail: [email protected]

Hema Joshi, M Med SciAssistant CoordinatorGA Division of Publit Health, MCH EpidemiologySection2 Peachtree St, NW Suite 14-405Atlanta, GA 30303Phone: 404-463-0906; Fax: 404-657-7517E-mail: [email protected]



HawaiiHawaii Birth Defects Program (HBDP)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital,nursing, environment, child program, advocacy,legislatorProgram status: Currently collecting dataStart year: 1988Earliest year of available data: 1986Organizational location: DOH/Children With SpecialHealth Needs Branch, Research Corporation of theUniversity of HawaiiPopulation covered annually: �19,906 average over 16yearsStatewide: yesCurrent legislation or rule: 8/15/1988 to 6/30/2002 -Hawaii Revised Statutes (HRS), Sections 321-31 and 338-2 in conjunction per Executive Chamber ruling byGovernor on 6/16/1989. HRS Sections 324-1 and 324-2for additional legislative authority (1990 Amendments).7/1/02 to Present - Act 252 (2002) - Relating to BirthDefects (SB 2763, SD 2, HD 2, CD 1)Legislation year enacted: 1989, 1990 and 2002

Case DefinitionOutcomes covered: All �1,154� recommended by CDCin their May 1987 Birth Defects Branch Six Digit Codefor Reportable Congenital Anomalies, based on B.P.A.Classification of Diseases (1979) and WHO ICD-9-CM(1977).Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminations (Datacollected on all elective medical terminations that werecarried out because a screening test or diagnositcprocedure documented that the fetus was severelyimpaired with a birth defect and the parents elected notto bring the baby to term.)Age: Up to one year after deliveryResidence: All in-state Hawaii births (resident and non-resident)

Surveillance methodsCase ascertainment: Active case ascertainment,population-basedCase finding/identification sources:Vital records: Vital records are used to supplementinformation collected from other data sources but are notused to primarily identify potential cases. Vital recordsdata are also used as denominators for determining birthdefects rates per 10,000 births.Other state based registries: The HBDP suppliesaggregate, de-identified data to the entities listed; theydo not supply data to the HBDP.Delivery hospitals: disease index or discharge index,discharge summaries, postmortem/pathology logs. Note:Information from specific logs, laboratories, clinics, etc.are usually found in the medical record when doingchart review.Pediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries. Information from

specific logs, laboratories, clinics, etc. are usually foundin the medical record when doing chart review.Other specialty facilities: prenatal diagnostic(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetics

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with a CDC/BPA code, all stillborn infants, allneonatal deaths, all prenatal diagnosed or suspectedcases. Medical terminations and spontaneous abortionswhere fetus was diagnosed with a birth defect andparents elected not to bring baby to term or motherspontaneously aborted.Conditions warranting a chart review beyond thenewborn period: all infant deaths (excludingprematurity), childhood deaths between 1 and 6, anyinfant with a codable defectCoding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family history,mataernal risk factorsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history


Data AnalysisData analysis software: MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreview, timelinessData use and analysis: routine statistical monitoring,public health program evaluation, baseline rates, rates bydemographic and other variables, monitoring outbreaksand cluster investigations, time trends, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, grant proposals, education/publicawareness, prevention projects, publication of articles inpeer reviewed professional journals.

System IntegrationSystem links: Although not initiated yet, the HBDP is inthe planing stages of embarking on a GIS statisticalmapping project.



FundingFunding source: general state funds 63%, CDC grant 28%,other federal funding 5%, private foundations 4%

OtherWeb site: http://members.aol.com/entropynot/hbdp.htmlSurveillance reports on file: Eleven (11) Hawaii BirthDefects Program Statewide Surveillance Data Reports -1) � 1989-1991, 2) � 1988-1993, 3) � 1988-1994, 4) �1988-1995, 5) � 1987-1996, 6) � 1986-1997, 7) � 1986-1998, 8) � 1986-1999, 9) � 1986-2000, and 10) �1986-2001, and 11) 1986-2002Procedure manual available: yesAdditional information on file: HBDP informationalbrochure; copies of legislation; original and revisedabstraction forms; abstraction manual; annual reports;HBDP data; quality assurance reports (completeness,accuracy, timeliness); special study reports (6).

Contact(s)Ruth D. Merz, MS, AdministratorHawaii Birth Defects Program76 North King Street, #208Honolulu, HI 96817-5157Phone: 808-587-4120; Fax: 808-587-4130E-mail: [email protected]



Idaho

Program status: No surveillance program

Contact(s)Russell A. DukeChief, Bureau of Clincal and Preventive ServicesIdaho Dept of Health and Welfare450 W. State StreetBoise, ID 83720Phone: 208-334-0670; Fax: 208-332-7307E-mail: [email protected]



IllinoisAdverse Pregnancy Outcomes Reporting System (APORS)

Purpose: surveillance, service, preventionPartner: Department of Health, university, hospital,environment, advocacy, legislatorProgram status: Currently collecting dataStart year: 1988Earliest year of available data: 1989Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 184,000Statewide: yesCurrent legislation or rule: Illinois Health andHazardous Substances Registry Act (410 ILCS 525)Legislation year enacted: 1985

Case DefinitionOutcomes covered: ICD-9-CM Codes 740.0 through 759.9;infants positive for controlled substances; seriouscongenital infections; congenital endocrine, metabolic orimmune disorders; congenital blood disorders; otherconditions such as retinopathy of prematurity, fetal alcoPregnancy outcome: live births, fetal deaths—stillbirths,spontaneous abortions, etc. (20 weeks gestation andgreater), live births, fetal deaths—stillbirths, spontaneousabortions, etc.Age: End of newborn hospitalizationResidence: In-state births mandatory

Surveillance methodsCase ascertainment: Population based, passiveascertainment of newborn cases. Active ascertainment ofmajor birth defects diagnosed up to 2 years of age began7/01.Case finding/identification sources:Vital records: birth certificates, fetal death certificatesDelivery hospitals: disease index or discharge index,discharge summaries, Hospitals are mandated to identiynewborn cases and report to IDPH.Pediatric & tertiary care hospitals: disease index ordischarge index, Hospitals are mandated to reportnewborns discharged from any to the NICU or specialityunits.

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with a CDC/BPA code, any chart with selecteddefects or medical conditions ie abnormal facies,congenital heart disease, �1500 grams, all neonataldeathsCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: MS Access, FoxPro,Mainframe

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: re-abstraction of cases, double-checking of assigned codes, comparison/verificationbetween multiple data sources, data/hospital audits,timelinessData use and analysis: routine statistical monitoring,rates by demographic and other variables, time trends,epidemiologic studies (using only program data), needsassessment, service delivery, referral, grant proposals,education/public awareness

System IntegrationSystem integration: No


OtherWeb site: idph.state.il.us/about/epi/aporsrpt.htmSurveillance reports on file: See Web SiteComments: APORS is transition to more active caseascertainment and expand case age to 2 years.

Contact(s)Trish Egler, MPAManagerIllinois Department of Public Health605 W. Jefferston StreetSpringfield, IL 62761Phone: 217-785-7133; Fax: 217-557-5152E-mail: [email protected]

Tiefu Shen, MD, MPH, PhDDivision ChiefIllinois Department of Public Health605 W. Jefferson StreetSpringfield, IL 62761Phone: 217-785-7118; Fax: 217-524-1770E-mail: [email protected]



IndianaIndiana Birth Defects and Problems Registry (IBDPR)

Purpose: surveillance, research, servicePartner: university, hospital, child programs, advocacygroups, legislatorsProgram status: Currently collecting dataStart year: 2002Earliest year of available data: 2005 (for births occurringin 2003)Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 85,000Statewide: yesCurrent legislation or rule: IC 16-38-4-7Rule 410 IAC 21-3Legislation year enacted: 2001

Case DefinitionOutcomes covered: ICD-9-CM Codes 740-759.9, fetaldeaths, metabolic and hearing disorders from NewbornScreening, selected neoplasms, congenital blooddisorders, certain eye disorders, Fetal Alcohol SpectrumDisorder (760.71), and Pervasive Developmental Disorder(299.0)Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater), electiveterminationsAge: Less than 3 years of age; age up to 5 years for FetalAlcohol Spectrum Disorder and PervasiveDevelopmental DisorderResidence: In and out of state births to state residents

Surveillance methodsCase ascertainment: Passive, population-based, hospitalCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificates, electivetermination certificatesOther state based registries: newborn hearing screeningprogram, cancer registry, newborn screening lab dataDelivery hospitals: disease index or discharge index,chart audits of 45 targeted birth defectsPediatric & tertiary care hospitals: dischargesummaries, chart audits of 45 targeted birth defectsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.)Other sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:charts of 45 targeted medical conditions.Coding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex,etc.), gravidity/parity, illnesses/conditions, prenatal care,

prenatal diagnostic information, pregnancy/delivery complications, maternal risk factors, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history


Data AnalysisData analysis software: SASQuality assurance: validity checks,comparison/verification between multiple data sources,data/hospital audits, clinical review, timeliness,physician reports

System IntegrationSystem links: state registry, final birth fileSystem integration: The database is linked with births,deaths, fetal deaths, and newborn screening data.

FundingFunding source: general state funds 3%, MCH funds 25%,CDC grant 72%

OtherWeb site: www.in.gov/isdh/programs/idbpr

Contact(s)Nancy B. Meade, RD, MPHProgram Manager, Genomics in Public Health/Newborn ScreeningIndiana State Department of Health2 North Meridian StreetIndianapolis, IN 46204Phone: 317-233-7827; Fax: 317-233-1300E-mail: [email protected]



IowaIowa Birth Defects Registry (IBDR)

Purpose: surveillance, research, service, prevention,Prevention Education ProgramsPartner: Department of Health, university, hospital,environment, legislatorProgram status: Currently collecting dataStart year: 1983Earliest year of available data: 1983Organizational location: UniversityPopulation covered annually: 37,831 avg 10 yrStatewide: yesCurrent legislation or rule: Administrative Code of Iowa,Volume I, Chapter 135.37, Section 40, Division IIILegislation year enacted: 1986; Revised 2001, 2003

Case DefinitionOutcomes covered: Major Birth Defects and MetabolicDisordersPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: 1 yearResidence: Maternal residence in Iowa at time of delivery

Surveillance methodsCase ascertainment: Population-based (state-wide), activecase ascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logs, postmortem/pathology logs,surgery logs, specialty outpatient clinicsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,surgery logs, laboratory logs, specialty outpatient clinicsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilitiesOther sources: physician reports, Outpatient SurgeryFacilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart with aselected list of ICD9-CM codes outside 740-759, any chartwith a CDC/BPA code, any chart with selected procedurecodes, any chart with selected defects or medical conditionsie abnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, all stillborninfants, all neonatal deaths, all elective abortions, allprenatal diagnosed or suspected casesConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,failure to thrive, developmental delay, CNS condition (ieseizure), GI condition (ie intestinal blockage),cardiovascular condition, all infant deaths (excluding

prematurity), ocular conditions, auditory/hearingconditions, any infant with a codable defectCoding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Oracle,Mainframe

Data AnalysisData analysis software: SPSS, SAS, MS Access, OracleQuality assurance: validity checks, re-abstraction of cases,double-checking of assigned codes, comparison/verificationbetween multiple data sources, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, capture-recapture analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: state registry, final birth file, environmentalSystem integration: No


OtherWeb site: http://www.public-health.uiowa.edu/birthdefectsSurveillance reports on file: Iowa Birth Defects RegistryAnnual Report 2000, 2002Procedure manual available: yes

Contact(s)Paul A. Romitti, PhDDirectorIowa Birth Defects RegistryUniversity of Iowa, C21-E GH, 200 Hawkins DrIowa City, IA 52242Phone: 319-384-5012; Fax: 319-353-8711E-mail: [email protected]



Bradley D. McDowell, PhDDeputy DirectorIowa Birth Defects RegistryW117 Oakdale HallIowa City, IA 52242Phone: 319-335-4107; Fax: 319-335-4030E-mail: [email protected]



KansasBirth Defects Reporting System

Purpose: RegistryPartner: hospitalProgram status: Currently collecting dataStart year: 1985Earliest year of available data: 1985Organizational location: Department of Health (VitalStatistics), Department of Health (Maternal and ChildHealth)Population covered annually: 39,338 (Year 2002)Statewide: yesCurrent legislation or rule: KSA 65-102Legislation year enacted: 1979

Case DefinitionOutcomes covered: The outcome data below are availablefrom Office of Vital Statistics, but are not used as part ofa birth defects surveillance system. Twenty-fouranomalies are listed on the birth certificate and arereported, however, these are not linked to ICD codes.Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: Passive reporting on congenital malformationreports continues through the first year of life.Residence: In and out of state births to Kansas residentsand in-state births to out of state residents.

Surveillance methodsCase ascertainment: Passive, population-based., passive,hospitalCase finding/identification sources:Vital records: birth certificatesPediatric & tertiary care hospitals: CongenitalMalformations reporting form - sent by hospitals forinfants up to one year of age.

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: Mainframe

Data AnalysisData analysis software: SAS, Ad-hoc summary reportsdeveloped as needed from Crystal Reports.Quality assurance: Office of Vital Statistics conductsverification on birth certificate data.Data use and analysis: routine statistical monitoring,

rates by demographic and other variables, monitoringoutbreaks and cluster investigations, Ad-hoc uponrequest.

System IntegrationSystem links: state registrySystem integration: Our program has a link with vitalstatistics records.


Contact(s)Jane H. Stueve, RN, BSNBirth Defects Registry CoordinatorKansas Department of Health & Environment1000 SW Jackson, Suite 220Topeka, KS 66612-1274Phone: 785-291-3363; Fax: 785-291-3493E-mail: [email protected]

Carloyn S. Nelson, BSEDirector, Children’s Develomental ServicesKansas Dept of Health and Environment1000 SW Jackson Suite 220Topeka, KS 66612-1274Phone: 785-296-6136; Fax: 785-296-8626E-mail: [email protected]



KentuckyKentucky Birth Surveillance Registry (KBSR)

Purpose: surveillance, service, prevention of birth defectsPartner: Department of Health, university, hospital,environment, child program, advocacy, legislatorProgram status: Currently collecting dataStart year: 1996Earliest year of available data: 1998Organizational location: Department for Public Health,Division of Adult and Child Health Improvement,Maternal and Child Health BranchPopulation covered annually: 54,500Statewide: yesCurrent legislation or rule: KRS 211.651-211.670Legislation year enacted: 1992

Case DefinitionOutcomes covered: Major Birth Defects, Genetic Diseases,Fetal MortalityPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater), 20 weeksor 350 gms., elective terminations (20 weeks gestationand greater), Elective terminations prior to 20 weeks areidentified in pilot active surveillance project at eighthospitals in Kentucky which represent 36% of births.Age: up to fifth birthdayResidence: All in-state births; out of state births to stateresidents

Surveillance methodsCase ascertainment: Combination of active and passive,population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificates, Medicallaboratory reporting is mandated, voluntary outpatientreportingOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), ICU/NICU logs or charts, specialty outpatientclinics, Laboratory recordsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, Laboratory recordsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilitiesOther sources: physician reports, Local healthdepartments

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, all prenataldiagnosed or suspected cases

Conditions warranting a chart review beyond the newbornperiod: facial dysmorphism or abnormal facies, failure tothrive, CNS condition (ie seizure), cardiovascular condition,any infant with a codable defectCoding: ICD-9-CM, ICD-10 for Vital Statistics death data

Data CollectedInfant/fetus: identification information (name,address, date-of-birth, etc.), demographicinformation (race/ethnicity, sex, etc.), birthmeasurements (weight, gestation, Apgars, etc.), testsand procedures, infant complications, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Mainframe

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: double-checking of assigned codes,comparison/verification between multiple data sources,data/hospital audits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, identification of potential cases for otherepidemiologic studies, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: final birth file, KBSR will be incorporatedinto the early childhood data repository in Kentucky


OtherWeb site: http://publichealth.state.ky.us/kbsr.htmSurveillance reports on file: legislation and regulation;Hospital Reporting Administrative Manual; draftconfidentiality guidelines; conditions definitions, KBSRfact sheet, KBSR brochureProcedure manual available: yes

Contact(s)Joyce M. Robl, MS, CGCKBSR Program AdministratorKentucky Department for Public Health275 East Main Street, HS 2GW-AFrankfort, KY 40621Phone: 502-564-2154 x3768; Fax: 502-564-8389E-mail: [email protected]



Sandy G Fawbush, RNNurse Consultant/InspectorKentucky Department for Public Health275 East Main Street, HS 2GW-AFrankfort, KY 40621Phone: 502-564-2154 x3761; Fax: 502-564-8389E-mail: [email protected]



LouisianaLouisiana Birth Defects Monitoring Network (LBDMN)

Purpose: surveillance, servicePartner: university, hospital, child program, advocacyProgram status: Program has not started collecting datayetStart year: 2004Earliest year of available data: 2005Organizational location: Children’s Special HealthServicesPopulation covered annually: 65,000 �Statewide: yesCurrent legislation or rule: R.S. 40:31.41 - 40:31.48, ActNo. 194Legislation year enacted: 2001

Case DefinitionOutcomes covered: major structural, functional, orgenetic birth defectAge: up to third birthdayResidence: in- and out-of-state births to state residents(tentative criteria)

Surveillance methodsCase ascertainment: activeCase finding/identification sources:Vital records: in progressOther state based registries: in progressDelivery hospitals: in progressPediatric & tertiary care hospitals: in progressThird party payers: in progress

Case AscertainmentConditions warranting chart review in newborn period:in progressCoding: in progress

Data Collection Methods and StorageDatabase storage/management: MS Access, in progress

Data AnalysisData analysis software: in progressQuality assurance: in progressData use and analysis: in progress

System IntegrationSystem links: in progress

OtherWeb site: http://oph.dhh.state.la.us/childrensspecial/birthdefect/index.html

Contact(s)Linda B. Pippins, MCDAdministrator, Children’s Special Health ServicesDHH/Office of Public Health325 Loyola Ave., Ste. 607New Orleans, LA 70112Phone: 504-568-5055; Fax: 504-568-7529E-mail: [email protected]



MaineMaine Birth Defects Program (MBDP)

Purpose: surveillance, service, preventionPartner: university, hospital, nursing, child program,advocacyProgram status: Currently collecting dataStart year: 1999Earliest year of available data: Reporting began May 1,2003Organizational location: Department of Health andHuman Services, Bureau of HealthPopulation covered annually: 13,500Statewide: yesCurrent legislation or rule: 22 MRSA c. 1687Legislation year enacted: 1999

Case DefinitionOutcomes covered: Selected major birth defects: NTD,Clefts, Gastroschisis and Omphalocele, Trisomy 21 andMajor heart defects,Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater),prenatally diagnosed at any gestation, electiveterminationsAge: Through age oneResidence: All in-state births to Maine residents

Surveillance methodsCase ascertainment: Combination of active and passivecase ascertainment, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,specialty outpatient clinicsPediatric & tertiary care hospitals: disease index ordischarge index, ICU/NICU logs or charts, pediatriclogs, specialty outpatient clinicsOther specialty facilities: genetic counseling/clinicalgenetic facilities, maternal serum screening facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart withselected defects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checked, all prenatal diagnosed or suspectedcasesConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,cardiovascular condition, any infant with a codabledefectCoding: ICD-9-CM


gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Citrix

Data AnalysisData analysis software: SAS, Stat-exactQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,observed vs expected analyses, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects


FundingFunding source: MCH funds 5%, genetic screeningrevenues 25%, CDC grant 70%

OtherWeb site: pendingAdditional information on file: Program manual in draftform.

Contact(s)Ellie Mulcahy, RNCDirector, Genetics ProgramMaine Bureau of Health11 State House Station, 286 Water St.-7th floorAugusta, ME 04333Phone: 207-287-4623; Fax: 207-287-4743E-mail: [email protected]

Patricia Y. Day, RNProgram Coordinator, MBDPMaine Bureau of Health11 State House Station, 286 Water St. 7th floorAugusta, ME 04333Phone: 207-287-8424; Fax: 207-287-4743E-mail: [email protected]



MarylandMaryland Birth Defects Reporting And Information System (BDRIS)

Purpose: surveillance, research, servicePartner: Department of Health, university, hospital,environment, child program, advocacy, legislatorProgram status: Currently collecting dataStart year: 1983Earliest year of available data: 1984Organizational location: Family Health Administration,Office for Genetics & Children with Special Health CareNeedsPopulation covered annually: 68,000Statewide: yesCurrent legislation or rule: Health-General Article,Section 18-206; Annotated Code of MarylandLegislation year enacted: 1982

Case DefinitionOutcomes covered: Selected Birth Defects -Anencephaly, Spina Bifida, Hydrocephaly, Cleft Lip,Cleft Palate, Esophageal Atresia/Stenosis, Rectal/AnalAtresia, Hypospadias, Reduction Deformity - Upper orLower Limb, Congenital Hip Dislocation, and DownSyndromePregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater or ��500grams weight; We do accept reports on fetal deaths �500grams or �20 weeks if sent to us.), elective terminations(20 weeks gestation and greater or ��500 grams weight;We do accept reports on terminations �500grams or �20weeks if sent to us.)Age: NewbornResidence: All in-state births

Surveillance methodsCase ascertainment: Passive surveillance, multiplesource, population basedCase finding/identification sources:Vital records: birth certificates, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, Sickle CellDiseaseDelivery hospitals: obstetrics logs (i.e., labor & delivery),regular nursery logs, ICU/NICU logs or charts, SentinelBirth Defects hospital report form is our primary source.Pediatric & tertiary care hospitals: dischargesummaries, ICU/NICU logs or charts, Sentinel BirthDefects hospital report form is our primary source.Midwifery facilities: YesOther specialty facilities: genetic counseling/clinicalgenetic facilities, maternal serum screening facilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart withselected defects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checked, All fetal death certificatesCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, maternal risk factors,family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Mainframe,Visual dBASE, SAS, ASCII files

Data AnalysisData analysis software: SASQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sourcesData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, time-space cluster analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: In the process of linkage with other stateregistries/databasesSystem integration: No

FundingFunding source: general state funds 100%

OtherWeb site: http://fha.state.md.us/genetics (then selectBirth Defects Reporting and Information System)Surveillance reports on file: Provisional surveillancereports 1984-1992; 1995-2000, 2001Procedure manual available: yesAdditional information on file: Copies of publications,legislation, miscellaneous booklets and other informationrelated to birth defects surveillance in Maryland.

Contact(s)Susan R. Panny, MDDirector, Office for Genetics and CSHCNMaryland Dept. of Health & Mental Hygiene201 W. Preston Street, Room 421ABaltimore, MD 21201Phone: 410-767-6730; Fax: 410-333-5047E-mail: [email protected]



Rosemary A. Baumgardner, BAData Manager, Birth Defects ProgramMaryland Dept. of Health & Mental Hygiene201 W. Preston Street, Room 423ABaltimore, MD 21201Phone: 410-767-6801; Fax: 410-333-5047E-mail: [email protected]



MassachusettsMassachusetts Center For Birth Defects Research And Prevention, Birth Defect Monitoring Program,

Massachusetts Department Of Public Health (MCBDRP)

Purpose: surveillance, research, service, preventionPartner: university, hospital, environment, advocacyProgram status: Currently collecting dataStart year: 1997Earliest year of available data: 1999 for statewide dataOrganizational location: Bureau of Family andCommunity HealthPopulation covered annually: 81,000Statewide: yesCurrent legislation or rule: Massachusetts General Laws,Chapter 111, Section 67E. In 2002 the MassachusettsLegislature amended this statute, expanding the birthdefects monitoring program. The new law: 1) increasesmandated reporting up to age three; 2) requiresphysicians to report to MDPH within 30 days ofdiagnosis; 3) sets out requirements for the use of thisdata; 4) requires MDPH to promulgate regulationsgoverning the operation of the Birth Defects MonitoringProgram.Legislation year enacted: 1963

Case DefinitionOutcomes covered: Major structural birth defects andchromosomal anomalies of medical, surgical or cosmeticsignificance.Pregnancy outcome: live births, reportable fetal deaths—stillbirths, spontaneous abortions, etc. (20 weeksgestation and greater or ��350 grams)Age: up to one year, up to three years when newlegislation implemented (regulations pending)Residence: in and out-of-state births to state residents

Surveillance methodsCase ascertainment: population based, state-wide,combination of active case ascertainment andadministrative reviewCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,obstetrics logs (i.e., labor & delivery), regular nurserylogs, ICU/NICU logs or charts, postmortem/pathologylogsPediatric & tertiary care hospitals: disease index ordischarge index, ICU/NICU logs or charts, postmortem/pathology logsOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions i.e.abnormal facies, congenital heart disease, all stillborninfantsConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,auditory/hearing conditions, any infant with a codabledefectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history

Data Collection Methods and StorageDatabase storage/management: Microsoft Access

Data AnalysisData analysis software: SAS, Microsfot Access,Microsoft ExcelQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, grantproposals, Selected cases from surveillance are eligiblefor CDC’s National Birth Defects Prevention Study

System IntegrationSystem links: final birth file, fetal death file,Massachusetts Pregnancy to Early Life Longitudinal(PELL) Linkage Project


OtherWeb site: website in developmentSurveillance reports on file: First surveillance reportpublished in November 2001; available online at http://www.state.ma.us/dph/bhsre/birthdefects/bdefects.htmor by calling contacts; MCBDRP Prevention andResource Booklet athttp://www.state.ma.us/dph/bhsre/birthdefects/bdefects.htmProcedure manual available: yesComments: Statewide coverage started October 1998

Contact(s)Linda Casey, MS, MPHAdministration Director of Research and OperationMassachusetts Department of Public Health5th Floor, 250 Washington StreetBoston, MA 02108-4619Phone: 617-624-5507; Fax: 617-624-5574E-mail: [email protected]



Cathy Higgins, BASurveillance CoordinatorMassachusetts Department of Public Health5th Floor, 250 Washington StreetBoston, MA 02108-4619Phone: 617-624-5510; Fax: 617-624-5574E-mail: [email protected]



MichiganMichigan Birth Defects Registry (MBDR)

Purpose: surveillance, research, service, prevention,incidence and mortality statisticsPartner: Department of Health, university, hospital,environment, legislatorProgram status: Currently collecting dataStart year: 1992Earliest year of available data: 1992Organizational location: Department of Health(Epidemiology/Environment), Department of Health(Vital Statistics)Population covered annually: 135,400Statewide: yesCurrent legislation or rule: Public Act 236 of 1988Legislation year enacted: 1988

Case DefinitionOutcomes covered: Congenital anomalies, certaininfectious diseases, conditions caused by maternalexposures and other diseases of major organ systemsPregnancy outcome: live births (all gestational ages andbirth weights)Age: up to two years after deliveryResidence: Michigan births regardless of residence, out ofstate births diagnosed or treated in Michigan regardlessof residence

Surveillance methodsCase ascertainment: passive, population-based,combinationCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath reporting, matched birth/death file, cytogeniclaboratories, genetics clinics, hospital discharge dataOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registryDelivery hospitals: disease index or discharge index,specialty outpatient clinicsPediatric & tertiary care hospitals: disease index ordischarge index, specialty outpatient clinicsThird party payers: Medicaid databasesOther specialty facilities: cytogenetic laboratories,genetic counseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checkedConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,ocular conditions, auditory/hearing conditions, anyinfant with a codable defectCoding: ICD-9-CM


gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: FoxPro

Data AnalysisData analysis software: SPSS, MS Access, Fox-proQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, data/hospitalaudits, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, service delivery, referral, grant proposals,education/public awareness, prevention projects

System IntegrationSystem links: final birth fileSystem integration: No, data from vital records andother sources are extracted and loaded into registry asopposed to truly integrated database structures.

FundingFunding source: general state funds 50%, CDC grant 25%,other federal funding 12%, EHDI 12.5%

OtherWeb site: http://www.michigan.gov/mdch/0,1607,7-132-2944_4670–,00.htmlSurveillance reports on file: birth defects incidence andmortality annual reportsProcedure manual available: yes

Contact(s)Glenn Copeland, MBADirectorMichigan Birth Defects Registry3423 N. LoganLansing, MI 48909Phone: 517-335-8677; Fax: 517-335-9513E-mail: [email protected]

Lorrie Simmons, RHITField RepresentativeMichigan Dept. of Community Health3423 N. Logan St.Lansing, MI 48909Phone: 517-335-9197; Fax: 517-335-8711E-mail: [email protected]



Minnesota

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital, earlychildhood prevention programs, advocacy, legislatorProgram status: Currently collecting dataStart year: 2005Earliest year of available data: 2005Organizational location: Department of Health,Environmental HealthPopulation covered annually: 68,000Statewide: yesCurrent legislation or rule: MS 144.2215Legislation year enacted: 2004

Case DefinitionOutcomes covered: major “reported birth defects” asdefined by CDC and ICD-9 codes.Pregnancy outcome: live births, fetal deaths—stillbirths,spontaneous abortions, etc.Age: up to 1 year after deliveryResidence: only will abstract in-state data

Surveillance methodsCase ascertainment: Combination of active and passivecase ascertainment, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificates, infantdeath recordsOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), ICU/NICU logs or charts, specialty outpatientclinicsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, specialty outpatient clinicsThird party payers: Medicaid databases, HMOs

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions (i.e.abnormal facies, congenital heart disease), any birthcertificate with a birth defect box checkedCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name,address, date-of-birth, etc.), demographicinformation (race/ethnicity, sex, etc.), birthmeasurements (weight, gestation, Apgars, etc.), testsand procedures, infant complications, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parityFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data AnalysisData analysis software: SASQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources, physician review as needed,additional quality control checks may be added afterstart-upData use and analysis: epidemiologic studies (using onlyprogram data), referral, grant proposals,education/public awareness, prevention projects; Note:full system implementation in 2005 and many of theselisted above will be used.


FundingFunding source: general state funds 5%, CDC grant 90%,March of Dimes in-kind match to CDC grant 5%

OtherWeb site: www.health.state.mn.usSurveillance reports on file: data summaries andservices/prevention updates are availabe on websiteComments: System will use an opt-out format that willbe monitored regularly to ensure that data trends remainvalid.

Contact(s)Myron Falken, PhD, MPHPrincipal EpidemiologistMinnesota Department of Health121 East 7th Place, Suite 220St. Paul, MN 55164Phone: 651-215-0877; Fax: 651-215-0975E-mail: [email protected]

Daniel Symonik, PhDUnti SupervisorMinnesota Department of Health121 East 7th Place, Suite 220St. Paul, MN 55164Phone: 651-215-0776; Fax: 651-215-0975E-mail: [email protected]



MississippiMississippi Birth Defects Registry (MBDR)

Purpose: surveillancePartner: Department of Health, hospitalProgram status: Currently collecting dataStart year: 2000Earliest year of available data: 2000Organizational location: Department of Health(Maternal and Child Health), Division of GeneticServices, Mississippi State Department of HealthPopulation covered annually: 42,000Statewide: yesCurrent legislation or rule: Section 41-21-205 of theMississippi CodeLegislation year enacted: 1997

Case DefinitionOutcomes covered: A birth defect is an abnormality ofstructure, function or metabolism, whether geneticallydetermined or a result of environmental influencesduring embryonic or fetal life. A birth defect maypresent from the time of conception through one yearafter birth, or later in life.Pregnancy outcome: live births (all gestational ages andbirth weights, 350 grams or more)Age: 0 to 21Residence: In and out of state births to state residents

Surveillance methodsCase ascertainment: combination of active and passivecase ascertainmentCase finding/identification sources:Vital records: birth certificates, fetal death certificatesOther state based registries: newborn hearing screeningprogram, newborn biochemical screening program,cancer registryDelivery hospitals: disease index or discharge index,discharge summariesPediatric & tertiary care hospitals: disease index ordischarge index, discharge summariesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anybirth certificate with a birth defect box checkedConditions warranting a chart review beyond thenewborn period: CNS condition (ie seizure), GI condition(ie intestinal blockage), GU condition (ie recurrentinfections), cardiovascular condition, ocular conditions,auditory/hearing conditions, any infant with a codabledefectCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: MS AccessQuality assurance: validity checksData use and analysis: routine statistical monitoring,education/public awareness

FundingFunding source: MCH funds 10%, genetic screeningrevenues 90%

Contact(s)Jerry McClure, BSDirector, Genetics ProgramMississippi State Dept. of HealthP.O. Box 1700Jackson, MS 39215-1700Phone: 601-576-7619; Fax: 601-576-7498E-mail: [email protected]

Pat Terry, LSWBranch DirectorMississippi State Dept. of HealthP.O. Box 1700Jackson, MS 39215-1700Phone: 601-576-7619; Fax: 601-576-7498E-mail: [email protected]



MissouriMissouri Birth Defects Registry

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital,environment, child program, advocacy, legislatorProgram status: Currently collecting dataStart year: 1985Earliest year of available data: 1980Organizational location: Department of Health (VitalStatistics)Population covered annually: 75,000Statewide: yes

Case DefinitionOutcomes covered: ICD9 codes 740-759, plus genetic,metabolic, and other disordersPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater, fetaldeath certificates are only source of data). Surveillance ofterminations currently limited to NTDs, expansion inprogressAge: up to one year after deliveryResidence: in and out of state births to state residents

Surveillance methodsCase ascertainment: passive, multi-sourceCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: discharge summariesPediatric & tertiary care hospitals: dischargesummaries, specialty outpatient clinicsOther sources: enrollment data, Missouri Dept. of MentalHealth

Case AscertainmentCoding: ICD-9-CM, ICD-10

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: SAS (Unix)

Data AnalysisData analysis software: SASQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources

Data use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, time-space cluster analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), needs assessment, service delivery, referral, grantproposals, education/public awareness, preventionprojects



OtherSurveillance reports on file: Missouri Birth Defects 1995-99

Contact(s)Janice M Bakewell, BAResearch AnalystMissouri Dept of Health, Health Data AnalysisPO Box 570, 920 WildwoodJefferson City, MO 65102Phone: 573-751-6278; Fax: 573-526-4102E-mail: [email protected]



MontanaMontana Birth Outcomes Monitoring System (MBOMS)

Purpose: surveillance, service, preventionPartner: Department of Health, hospital, advocacy,private practice physiciansProgram status: Currently collecting dataStart year: 1999Earliest year of available data: 2000Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 11,000Statewide: yesCurrent legislation or rule: none

Case DefinitionOutcomes covered: Major structural birth defects,chromosomal anomaliesPregnancy outcome: live births (�20 weeks gestation &500 grams), fetal deaths—stillbirths, spontaneousabortions, etc. (all gestational ages), electiveterminationsAge: Birth through age 3Residence: in-state births and out of state births to MTresidents

Surveillance methodsCase ascertainment: combination of active and passivecase ascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening programDelivery hospitals: disease index or discharge indexThird party payers: Medicaid databases, SSDI referralsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilitiesOther sources: physician reports, fetal pathology

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any birthcertificate with a birth defect box checkedConditions warranting a chart review beyond thenewborn period: cardiovascular conditionCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, prenatal diagnosticinformationFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SAS, Cluter Seer 2Quality assurance: double-checking of assigned codes,comparison/verification between multiple data sources,clinical review, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations,observed vs expected analyses, epidemiologic studies(using only program data), identification of potentialcases for other epidemiologic studies, referral, grantproposals, education/public awareness, preventionprojects

System IntegrationSystem links: state registrySystem integration: Integrated with Children withSpecial Health Care Needs database


Contact(s)Sib ClackSupervisorFCHB/ DPHHSP.O. Box 202951Helena, MT 59620-2951Phone: 406-444-4119; Fax: 406-444-2606E-mail: [email protected]



NebraskaNebraska Birth Defects Registry

Purpose: surveillance, research; we are in the process ofdeveloping a program of referral to services andprevention programs.Partner: DHHS, MCH, and hospitalProgram status: Currently collecting dataStart year: 1973Earliest year of available data: 1973Organizational location: Nebraska Health and HumanServices Regulation & Licensure Data ManagementSectionPopulation covered annually: Statewide, 24,000� birthsannuallyStatewide: yesCurrent legislation or rule: Laws 1972, LB 1203, §1, §2,§3, §4 (alternate citation: Public Health and Welfare[Codes] §71-645, §71-646, §71-647, §71-648, §71-649)Legislation year enacted: 1972

Case DefinitionOutcomes covered: All birth defects, exclusions accordingto CDC exclusion listPregnancy outcome: live births (greater than 20 weeksand greater than 500 grams), fetal deaths—stillbirths,spontaneous abortions, etc. (20 weeks gestation andgreater)Age: Birth to 1 yearResidence: In-state and out-of-state birth to stateresident

Surveillance methodsCase ascertainment: Combination of active and passivecase ascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,discharge summaries, ICU/NICU logs or charts,Nebraska Birth Defects Prevention Program CongenitalDefects Case RecordPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, specialty outpatient clinics, Nebraska BirthDefects Prevention Program Congenital Defects CaseRecordOther specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart withselected defects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checkedConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,CNS condition (ie seizure), GI condition (ie intestinalblockage), GU condition (ie recurrent infections),cardiovascular condition, ocular conditions, auditory/hearing conditions, any infant with a codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parityFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: Key-entry 3

Data AnalysisData analysis software: SASQuality assurance: re-abstraction of cases, double-checking of assigned codes, comparison/verificationbetween multiple data sources, case finding, data codingand entryData use and analysis: baseline rates, monitoringoutbreaks and cluster investigations, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, grant proposals, incidence rates, trendanalysis, birth defect registry


OtherSurveillance reports on file: 2002 report in Vital StatisticsReport. 2003 report will be available in published formin August of 2004.Procedure manual available: YesAdditional information on file: Copy of legislation,congenital defects case record formComments: State legislation introduced to allow releaseof patient-identifying information to approved researcherfor the purpose of research; development of a system sothat hospitals may use the electronic birth certificate toinitially alert the surveillance program of the birth of achild with an anomaly.

Contact(s)Carla M. Becker, RHIAHealth Data ManagerNebraska Health and Human Services System301 Centennial Mall South P.O. Box 95007Lincoln, NE 68509-5007Phone: 402-471-3575; Fax: 402-471-9728E-mail: [email protected]



NevadaNevada Birth Defects Registry

Purpose: surveillance, service, preventionPartner: universityProgram status: Currently collecting dataStart year: 2000Earliest year of available data: 2000Organizational location: Division of Health, Bureau ofFamily Health Services (MCH)Population covered annually: 33,000Statewide: No: Year 2000 data is for Las Vegas only.Year 2001 - Statewide data complete.Current legislation or rule: NRS 442.300 - 442.330 - BirthDefects Registry Legislation *** Regulation � NAC 442Legislation year enacted: 1999

Case DefinitionOutcomes covered: major birth defects and geneticdiseasesPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths (20 weeks gestation andgreater), elective terminations (20 weeks gestation andgreater)Age: Cover from 0-7 years of ageResidence: In-state births

Surveillance methodsCase ascertainment: Combination of active and passiveascertainment initially. Currently - system is a “passive”system., active ascertainment to re-commence 7/1/04Case finding/identification sources:Vital records: birth certificates, matched birth/death file,Hospital medical records - for year 2000Other state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registryDelivery hospitals: disease index or discharge indexPediatric & tertiary care hospitals: disease index ordischarge indexThird party payers: Medicaid databasesOther specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checkedConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,CNS condition (ie seizure), GI condition (ie intestinalblockage), GU condition (ie recurrent infections),cardiovascular condition, any infant with a codabledefectCoding: ICD-9-CM


gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, prenatal care, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: MS Access, Oracle,Mainframe

Data AnalysisData analysis software: SPSS, SAS, MS AccessQuality assurance: double-checking of assigned codes,comparison/verification between multiple data sources,data/hospital auditsData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,education/public awareness

System IntegrationSystem links: state registrySystem integration: Nevada has a data warehouse whichis currently able to link approximately 30 databases.Plans for this system indicate eventual capacity to linkup to 45 databases.

FundingFunding source: service fees 100%

Contact(s)Judith WrightBureau ChiefBureau of Family Health Services - State HealthDivision3427 Goni Road, Suite 108Carson City, NV 89706Phone: (775) 684-4285; Fax: (775) 684-4245E-mail: [email protected]

Gloria M. Deyhle, RN, BAHealth Program SepcialistNevada State Health Division3427 Goni Road, Suite 108Carson City, NV 89706Phone: (775) 684-4243; Fax: (775) 684-4245E-mail: [email protected]



New HampshireNew Hampshire Birth Conditions Program (NHBCP)

Purpose: surveillance, research, service, preventionPartner: university, hospital, child program, advocacy,legislatorProgram status: Currently collecting dataStart year: 2003Earliest year of available data: 2003Organizational location: Department of Health(Maternal and Child Health), Bureau of Vital Records:Bureau of Special Medical Services: Bureau of Nutritionand Health Promotion, UniversityPopulation covered annually: 13,560Statewide: No: Currently collecting data at DartmouthHitchcock Medical Center, New Hampshire’s primarytertiary center for obstetrical and neonatal care. Work isunderway to begin data collection in all birth hospitals.Current legislation or rule: Currently working toward alegislative rules revision that would include birth defects.

Case DefinitionOutcomes covered: Major birth defects and geneticdiseasesPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater), electiveterminationsAge: Fetuses �20 weeks gestation and newborns/infantsup to 1 year of age.Residence: All New Hampshire residents, those born in-state as well as out of state.

Surveillance methodsCase ascertainment: active case ascertainment andpopulation- basedCase finding/identification sources:Delivery hospitals: discharge summaries, Medicalrecords abstraction of charts of selected ICD 9 CodesPediatric & tertiary care hospitals: dischargesummaries, ICU/NICU logs or charts, specialtyoutpatient clinics, cytogenetics laboratory, perinatalpathology logs, Medical Genetics Clinic files, moleculargenetics laboratory, Prenatal Diagnosis Program filesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with a CDC/BPA code, any chart with selecteddefects or medical conditions ie abnormal facies,congenital heart disease, all stillborn infants, all infantsin NICU or special care nursery, all prenatal diagnosedor suspected casesConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,cardiovascular condition, any infant with a codabledefectCoding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, prenatal diagnosticinformation

Data Collection Methods and StorageDatabase storage/management: Oracle, The AURIS web-based reporting system, currently utilized by NHnewborn hearing screening program, is being expandedto meet the birth defects tracking requirements.

Data AnalysisData analysis software: SPSS, SAS, MS Access, STATAQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreviewData use and analysis: Data collection began at onehospital in 2003 and so no data use or analysis occurredin the past 12 months.

System IntegrationSystem links: Not at this timeSystem integration: Not at this time


OtherWeb site: Not as of 1/2004Surveillance reports on file: Not at this time

Contact(s)John B. Moeschler, MDProject DirectorDivision of Genetics and Child Development,Dept. of PediatricsDartmouth Hitchcock Medical Center1 Medical Center DriveLebanon, NH 03756Phone: 603-653-6053; Fax: 603-650-8268E-mail: [email protected]

Victoria A. Flanagan, BSN, MSRegional Program for Women’s and Children’s Health,Dartmouth Hitchcock Medical Center1 Medical Center DriveLebanon, NH 03756Phone: 603-650-6137; Fax: 603-650-3434E-mail: [email protected]



New JerseySpecial Child Health Services Registry (SCHS REGISTRY)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital,environment, child program, advocacy, legislatorProgram status: Currently collecting dataStart year: 1928Earliest year of available data: 1985Organizational location: Department of Health & SeniorServices - Special Child, Adult, and Early InterventionServicesPopulation covered annually: 114,500Statewide: yesCurrent legislation or rule: NJSA 26:8 et seq., NJAC 8:20- Enacted 08-04-1983, with effective date of 03-04-1985.Changes to legislation 1990, 1991, 1992. Readopted 05/2000.Legislation year enacted: 1983

Case DefinitionOutcomes covered: All birth defects, including structural,genetic, and biochemical are required to be reported.While not mandated, all special needs and any conditionwhich places a child at risk, eg. prematurity, asthma,cancer, developmental delay, are also reported.Pregnancy outcome: live births (all gestational ages &birth weights)Age: mandated reporting of birth defects diagnosed ��age 1, voluntary reporting of birth defects diagnosed �age 1 and all children diagnosed with Special Needsconditions who are �� 21 yrs. of ageResidence: in/out NJ births to NJ res; Because of linkwith SCHS Case Management system, also enroll anyonebecoming NJ res.

Surveillance methodsCase ascertainment: Passive, population-based reportingsystem with annual quality assurance visits by BDR staffto birthing hospitals, birthing centers and, pediatric carefacilities. Medical chart review is conducted on allchildren registered with any of the defects eligible forparticipation in the NBDPS.Case finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death fileOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, AIDS/HIVregistryDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), regular nursery logs, ICU/NICU logs orcharts, pediatric logs, postmortem/pathology logs,surgery logs, cardiac catheterization laboratories,specialty outpatient clinics, quality Assurance visitconsisting of chart review of 3 month periodPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,surgery logs, laboratory logs, cardiac catheterizationlaboratories, specialty outpatient clinics, qualityAssurance visit consisting of chart review of 3 m periodMidwifery facilities: Yes

Other specialty facilities: cytogenetic laboratories,genetic counseling/clinical genetic facilitiesOther sources: M.D. reports, Special Child HealthServices county based Case Management units, parents,schools, medical examiners

Case AscertainmentConditions warranting chart review in newbornperiod: any chart with a ICD9-CM code 740-759, anychart with a selected list of ICD9-CM codes outside740-759, all neonatal deaths, all death certificates for �1 year of ageConditions warranting a chart review beyond thenewborn period: GI condition (ie intestinal blockage), GUcondition (ie recurrent infections), cardiovascularcondition, all infant deaths (excluding prematurity),ocular conditions, any infant with a codable defectCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, etc.)Father: identification information (name, address, etc.)

Data Collection Methods and StorageDatabase storage/management: SAS

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources, data/hospital audits, clinicalreview, timeliness, merge registry with birth certificateregistry and the death certificate registryData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, time-space cluster analyses, epidemiologic studies (using onlyprogram data), identification of potential cases for otherepidemiologic studies, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: state registry, final birth fileSystem integration: hearing screening registry providesdirect feed into SCHS Registry.

FundingFunding source: MCH funds 85%, genetic screeningrevenues 5%, CDC grant 10%

OtherWeb site: http://www.state.nj.us/health/fhs/scregis.htmSurveillance reports on file: Special Child Health ServicesRegistry 1985-1989; Special Child Health ServicesRegistry 1985-1991; Special Child Health Services



Registry 1985-1994; Special Child Health ServicesRegistry 1990-1999 (in press).Procedure manual available: yesAdditional information on file: Information sheet, caserecord form, copy of legislation, quality assurance auditinformation

Contact(s)Leslie M. Beres, MS HygProgram ManagerNew Jersey Department of Health and Senior ServicesPO Box 364Trenton, NJ 08625-0364Phone: 609-292-5676; Fax: 609-633-7820E-mail: [email protected]

Mary M. Knapp, MSNNew Jersey CoordinatorNew Jersey Department of Health and Senior ServicesPO 364Trenton, NJ 08625-0364Phone: 609-292-5676; Fax: 609-633-7820E-mail: [email protected]



New MexicoNew Mexico Birth Defects Prevention And Surveillance System (NM BDPASS)

Purpose: surveillance, research, service, preventionPartner: university, hospital, child program, legislatureProgram status: Currently collecting dataStart year: 1995Earliest year of available data: 1995Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 27,000Statewide: yesCurrent legislation or rule: In January 2000, birth defectsbecame a reportable condition. These conditions areupdated by the Office of Epidemiology. This did notinvolve legislation, only a change in regulations.Legislation year enacted: January 1, 2000

Case DefinitionOutcomes covered: 740-760.71Pregnancy outcome: live births (all gestational ages andbirth weights); fetal deaths and terminations included inNTD countsAge: birth through age 14 yearsResidence: In state births to New Mexico residents (2001definition: previous years included out-of-state births toNM residents)

Surveillance methodsCase ascertainment: combination of active and passive,population-basedCase finding/identification sources:Vital records: birth certificatesOther state based registries: Children and Youth withSpecial Health Care Needs, Children’s ChronicConditions RegistryDelivery hospitals: medical record chart reviewPediatric & tertiary care hospitals: specialty outpatientclinics, including neurosurgery and plastic surgeryMidwifery facilities: YesThird party payers: Medicaid databases, healthmaintenance organizations (HMOs), Indian HealthServices, Children’s Medical Services (CMS)Other specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), genetic counseling/clinical geneticfacilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759 and 760.71, anybirth certificate with a birth defect box checked, allprenatal diagnosed or suspected cases, any chart with alist of other ICD9-CM codes selected by CMSConditions warranting a chart review beyond thenewborn period: same as aboveCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-

of-birth, etc.), demographic information (race/ethnicity,sex, etc.)Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SASQuality assurance: validity checks, reabstraction of cases,double-checking of assigned codes,comparison/verification between multiple data sourcesData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,grant proposals, education/public awareness, preventionprojects; Mar03-Mar04 NM BDPASS did not haveepidemiology staff; prevention teams developed teachingmodules.

System IntegrationSystem links: state registry, final birth fileSystem integration: Currently, BDPASS is integratedwith the Children’s Chronic Conditions Register.

FundingFunding source: general state funds 16%, MCH funds25%, CDC grant 59%

OtherWeb site: www.health.state.nm.usSurveillance reports on file: Birth Defects in New Mexico1997-1998; Birth Defects in New Mexico 1995-1999

Contact(s)Susan Nalder, EdD, MPH, CNMMCH Epi Program ManagerNM Dept. of Health2040 S. PachecoSanta Fe, NM 87505Phone: 505-476-8889; Fax: 505-476-8898E-mail: [email protected]

Tierney Murphy, MD, MPHCSTE-MCH Fellow, Mar2004-06NM Dept of Health2040 South PachecoSanta Fe, NM 87505Phone: 505-476-8918; Fax: 505-476-8898E-mail: [email protected]



New YorkNew York State Congenital Malformations Registry (CMR)

Purpose: surveillance, research, service, preventionPartner: university, hospital, child program, March OfDimesProgram status: Currently collecting dataStart year: 1982Earliest year of available data: 1983Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 260,000Statewide: yesCurrent legislation or rule: Public Health Law Art. 2,Title, II, Sect 225(5)(t) and Art. 2 Title I, sect 206(1)(j):Codes, Rules and Regulations,Chap 1, State SanitaryCode, part 22.3Legislation year enacted: 1982

Case DefinitionOutcomes covered: Major malformations, detailed listavailable upon request.Pregnancy outcome: live births (all gestational ages andbirth weights)Age: 2 yearsResidence: In-state and out-of-state birth to state resident;in-state birth to nonresident; all children born in orresiding in New York, up to age 2.

Surveillance methodsCase ascertainment: combination of active and passivecase ascertainment, populationCase finding/identification sources:Delivery hospitals: disease index or discharge index,ICU/NICU logs or chartsPediatric & tertiary care hospitals: disease index ordischarge index, ICU/NICU logs or chartsOther sources: physician reports, hospital discharge data

Case AscertainmentConditions warranting chart review in newborn period:charts with selected ICD-9CM codes in the 740-759Coding: CDC coding system based on BPA, ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: MS Access, FoxPro,Sybase

Data AnalysisData analysis software: SAS, MS Access, Visual FoxProQuality assurance: validity checks, double-checking of

assigned codes, comparison/verification betweenmultiple data sources, data/hospital auditsData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, time-space cluster analyses, capture-recaptureanalyses, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, service delivery, grant proposals, education/public awareness, prevention projects

System IntegrationSystem links: state registry, final birth file, StatewideHospital Discharge Database (SPARCS)

FundingFunding source: general state funds 12%, MCH funds27%, CDC grant 37%, other federal funding 24%

OtherWeb site: http://www.health.state.ny.us/nysdoh/cmr/cmrhome.htmSurveillance reports on file: Reports for 1983-1997.Procedure manual available: yes

Contact(s)Philip K. Cross, BSDirector, Congenital Malformations RegistryNew York Department of HealthFlanigan Square, Room 200; 547 River StreetTroy, NY 12180Phone: 518-402-7990; Fax: 518-402-7959E-mail: [email protected]

Charlotte Druschel, MD, MPHMedical Director, Center for Environmental HealthNew York Department of HealthFlanigan Square, Room 200; 547 River StreetTroy, NY 12180Phone: 518-402-7990; Fax: 518-402-7959E-mail: [email protected]



North CarolinaNorth Carolina Birth Defects Monitoring Program (NCBDMP)

Purpose: surveillance, research, service, prevention,Education, AdvocacyPartner: Department of Health, university, hospital, childprogram, advocacy, legislatorProgram status: Currently collecting dataStart year: 1987Earliest year of available data: 1989Organizational location: Department of Health (VitalStatistics)Population covered annually: 118,000Statewide: yesCurrent legislation or rule: NCGS 130A-131Legislation year enacted: 1995

Case DefinitionOutcomes covered: Major birth defectsPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater), electiveterminationsAge: Up to one year after deliveryResidence: NC resident births, in-state and out-of-stateoccurrence

Surveillance methodsCase ascertainment: Population-based, activeascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needsDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery)Pediatric & tertiary care hospitals: disease index ordischarge index, discharge summariesThird party payers: Medicaid databasesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), genetic counseling/clinical geneticfacilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected procedure codes, any birth certificatewith a birth defect box checked, all stillborn infants, allprenatal diagnosed or suspected casesConditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,

sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreview, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, timetrends, capture-recapture analyses, observed vs expectedanalyses, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, needs assessment, servicedelivery, referral, grant proposals, education/publicawareness, prevention projects, advocacy

System IntegrationSystem links: state registry, final birth file, VitalStatistics, Medicaid Paid Claims, MCH Program Data


OtherWeb site: www.schs.state.nc.us/SCHSSurveillance reports on file: Annual reports, Specialstudies

Contact(s)Robert E. Meyer, PhDNCBDMP DirectorNorth Carolina Center for Health Statistics1908 Mail Service CenterRaleigh, NC 27699-1908Phone: 919.715.4476; Fax: 919.733.8485E-mail: [email protected]

Jennifer WilliamsField SupervisorNorth Carolina Center for Health Statistics1908 Mail Service CenterRaleigh, NC 27699-1908Phone: 919.733-4728; Fax: 919.733.8485E-mail: [email protected]



North DakotaNorth Dakota Birth Defects Monitoring System (NDBDMS)

Purpose: surveillancePartner: university, March of DimesProgram status: Currently collecting dataStart year: 2002Earliest year of available data: 1994Organizational location: Department of Health (VitalStatistics), Department of Health (Maternal and ChildHealth), ND Department of Human Services (Children’sSpecial Health Services)Population covered annually: 7676Statewide: yesCurrent legislation or rule: North Dakota Centry code50-10Legislation year enacted: N/A

Case DefinitionOutcomes covered: Selected birth defects (NTDs,congenital heart defects, cleft lip and palate,chromosomal anomalies) and other risk factors that maylead to health and developmental problems.Pregnancy outcome: live births (all gestational ages andbirth weights, numbers collected and reported via VitalRecords), fetal deaths—stillbirths, spontaneous abortions,etc. (20 weeks gestation and greater, numbers collectedand reported via Vital Records), elective terminations(less than 20 week gestation, 20 weeks gestation andgreater)Age: Newborn periodResidence: In-state resident births and out of state birthreceiving services in ND

Surveillance methodsCase ascertainment: passiveCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registry,AIDS/HIV registry, FASDelivery hospitals: Birth certificate completionPediatric & tertiary care hospitals: specialty outpatientclinicsThird party payers: Medicaid databases, healthmaintenance organizations (HMOs), private insurersOther specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart withselected defects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checkedCoding: ICD-9-CM, ICD 10


gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: MS Access, Mainframe,Db2, SPSS, Excel

Data AnalysisData analysis software: SPSSQuality assurance: comparison/verification betweenmultiple data sources, clinical reviewData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, needs assessment, service delivery, referral,grant proposals, education/public awareness, preventionprojects

FundingFunding source: SSDI Grant

OtherWeb site: www.health.state.nd.us/ndhd/admin/vital/Procedure manual available: yes

Contact(s)Terry BohnSSDI CoordinatorChildern’s Special Health Services Division NDDepartment of Human Services600 East Boulevard Avenue, Dept. 301Bismarck, ND 58505-0200Phone: 701-328-4963; Fax: 701-328-1412E-mail: [email protected]



OhioOhio Connections For Children With Special Needs (OCCSN)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, hospital, childprogram, advocacy, legislatorProgram status: Program has not started collecting datayetStart year: 2004Earliest year of available data: N/AOrganizational location: Department of Health(Maternal and Child Health)Population covered annually: System in developmentStatewide: No: System in developmentCurrent legislation or rule: Ohio House Bill 534 signedinto law in July, 2000. “The Director of Health shallestablish and, if funds for this purpose are available,implement a statewide birth defects information systemfor the collection of information concerning congenitalanomalLegislation year enacted: 2000

Case DefinitionOutcomes covered: System in development

Surveillance methodsCase ascertainment: System in development


Contact(s)David P. Schor, MD, MPH, FAAPChief, Division of Family and Community HealthServicesOhio Department of Health246 N. High StreetColumbus, OH 43216-0118Phone: 614-466-1663; Fax: 614-728-9163E-mail: [email protected]

Anna E. Starr, BSGenetics Section AdministratorOhio Dept. of Health246 N. High StreetColumbus, OH 43215Phone: 614-995-5333; Fax: 614-564-2424E-mail: [email protected]



OklahomaOklahoma Birth Defects Registry (OBDR)

Purpose: surveillance, preventionPartner: hospital, Cytogenetics/ & Medical GeneticsProgram status: Currently collecting dataStart year: -1992; statewide 1994Earliest year of available data: 1992Organizational location: Department of Health (FamilyHealth Services)Population covered annually: 50,000Statewide: yesCurrent legislation or rule: 63 O.S. Section 1-550.2Legislation year enacted: 1992

Case DefinitionOutcomes covered: modified 6-digit ICD-9-CM codes forbirth defects and genetic diseasesPregnancy outcome: live births (�� 20 weeks gestation),fetal deaths—stillbirths, spontaneous abortions, etc. (20weeks gestation and greater), elective terminations (20weeks gestation and greater)Age: 2 yearsResidence: In-state births to state residents

Surveillance methodsCase ascertainment: population based, active caseascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,obstetrics logs (i.e., labor & delivery), regular nurserylogs, ICU/NICU logs or charts, pediatric logs, surgerylogs, specialty outpatient clinicsPediatric & tertiary care hospitals: disease index ordischarge index, pediatric logs, surgery logs, specialtyoutpatient clinicsThird party payers: Indian health services, Militaryhospitals delivering babiesOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with a CDC/BPA codeConditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information, family historyFather: identification information (name, address, date-

of-birth, etc.), demographic information (race/ethnicity,sex, etc.), family history


Data AnalysisData analysis software: SAS, MS Access, ArcView GISQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, timeliness,Editing of all completed abstractsData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations, time-space cluster analyses, needs assessment, referral, grantproposals, education/public awareness, preventionprojects, Program quality assurance

System IntegrationSystem links: 9/2003 awarded Environmental PublicHealth Tracking Grant to link health outcomes &environmental contamination data - in planning stages.


OtherSurveillance reports on file: 1992 & 1993 Annual Report -combined for Oklahoma, Tulsa and Cleveland Counties1994-1998 Annual ReportProcedure manual available: yesAdditional information on file: PRAMS Gram Vol 8 No3: Folic Acid Knowledge and Multivitamin Use AmongOklahoma Women; provisional rate tables for 1994-1997.Comments: Statewide data collection began in 1994.Additional information for case definitions residence:1995 began abstraction of Oklahoma residents born inFort Smith, Arkansas.

Contact(s)Kay A. Pearson, MSOklahoma Birth Defects Registry CoordinatorOklahoma State Department of Health; Screening,Special Services & SoonerStart1000 NE 10th Street, Room 710Oklahoma City, OK 73117-1299Phone: 405-271-9444 Ex 56744; Fax: 405-271-4892E-mail: [email protected]



Oregon


Contact(s)Kenneth D. Rosenberg, MD, MPHMCH EpidemiologistOregon Health Department800 NE Oregon Street #21, Suite 850Portland, OR 97232Phone: 503-731-4507; Fax: 503-731-4083E-mail: [email protected]



PennsylvaniaPennsylvania Follow-Up, Outreach, Referral And Education For Families (PA FORE FAMILIES)

Purpose: surveillance, servicePartner: university, hospital, nursing, advocacyProgram status: Program has not started collecting datayetStart year: 2003Earliest year of available data: 2003, statewide matcheddata file being collectedOrganizational location: Department of Health(Maternal and Child Health)Population covered annually: 142,380 resident live birthsin 2002.Statewide: yesCurrent legislation or rule: Not applicable

Case DefinitionOutcomes covered: 740-759.9 and 760.71 ICD-9Pregnancy outcome: live births (all gestational ages andbirth weights)Age: birth to 24 months of ageResidence: in-state births to state residents

Surveillance methodsCase ascertainment: population-based, passiveCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, Hospital discharge datacollected by the Pennsylvania Health Care CostContainment Council—(PHC4—a state agency).Other state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, Those checkedabove will eventually be linked.Delivery hospitals: discharge summaries, PHC4 data isbased on hospital discharge summariesPediatric & tertiary care hospitals: dischargesummaries, PHC4 data is based on hospital dischargesummariesOther specialty facilities: genetic counseling/clinicalgenetic facilities

Case AscertainmentCoding: ICD-9-CM, Limited to ICD9-CM 740-759.9 and760.71.

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), infant complications, birthdefect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), illnesses/conditions, familyhistory


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks,comparison/verification between multiple data sourcesData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,needs assessment, service delivery, referral, grantproposals, education/public awareness, preventionprojects


OtherComments: Pennsylvania has developed a PA FOREFamilies Handbook that contains general informationabout how parents and caregivers of children withspecial needs can access free or low cost insurancecoverage and specialized support services.

Contact(s)Steven B. Horner, MSPublic Health Program AdministratorPennsylvania Department of HealthP.O. Box 90, 7th floor East Wing, Health & Welfare Bldg.Harrisburg, PA 17108Phone: 717-783-8143; Fax: 717-772-0323E-mail: [email protected]

Robert F. Staver, MPAProgram ManagerPA Department of HealthP.O. Box 90, 7th floor East Wing, Health & Welfare Bldg.Harrisburg, PA 17108Phone: (717) 783-8143; Fax: (717) 705-9286E-mail: [email protected]



Puerto RicoPuerto Rico Folic Acid Campaign And Birth Defects Surveillance System (PRFAC/BDSS)

Purpose: surveillance, research, service, preventionPartner: Department of Health, university, nursing, childprogram, advocacyProgram status: Currently collecting dataStart year: 1995Earliest year of available data: 1995Organizational location: Division of Children withSpecial Health Care NeedsPopulation covered annually: 56,000Statewide: yesCurrent legislation or rule: No

Case DefinitionOutcomes covered: Neural Tube Defects (Anencephaly,Encephalocele, Myelomeningocele and Meningocele),Cleft Lip and/or Cleft Palate, Gastroschisis, Club Foot,Limb reduction defects, Down Syndrome, Omphalocele,Ambiguous Genitalia, Trisomy 13, Trisomy 18, ConjointsTwins, Albinism and Congenital Heart Defects.Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: up to 6 years after deliveryResidence: In state birth to state residents

Surveillance methodsCase ascertainment: Active case ascertainment andpopulation- basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,cancer registry, AIDS/HIV registryDelivery hospitals: disease index or discharge index,obstetrics logs (i.e., labor & delivery), regular nurserylogs, ICU/NICU logs or charts, pediatric logs,postmortem/pathology logs, surgery logs, specialtyoutpatient clinicsPediatric & tertiary care hospitals: ICU/NICU logs orcharts, pediatric logs, surgery logs, laboratory logsThird party payers: Medicaid databases, healthmaintenance organizations (HMOs)Other specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), genetic counseling/clinical geneticfacilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart withselected defects or medical conditions ie abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checked, all elective abortions, all infants inNICU or special care nursery, all prenatal diagnosed orsuspected casesConditions warranting a chart review beyond thenewborn period: failure to thrive, cardiovascularcondition, any infant with a codable defectCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SPSS, MS Access, ExcelQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreview, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, needs assessment, referral, grant proposals,education/public awareness, prevention projects

FundingFunding source: general state funds 3%, MCH funds 38%,CDC grant 52%, other federal funding 10%, CDCVisiting Fellowship Program

OtherWeb site: http://www.salud.gov.pr/AF/AFindex.htmSurveillance reports on file: Description of RegistryDevelopment, Case Report Form, manual for case reportform,Procedure manual available: yes

Contact(s)Elia M. Correa, RN, MPHCoordinatorPuerto Rico Folic Acid CampaignBirth Defects Surveillance SystemPR Department of HealthPO Box 70184San Juan, PR 00936Phone: 787-751-3654; Fax: 787-764-4259E-mail: [email protected]

Diana Valencia, MS, GCGenetic CounselorPuerto Rico Folic Acid CampaignBirth Defects Surveillance SystemPR Department of HealthPO Box 70184San Juan, PR 00936Phone: 787-274-5671; Fax: 787-764-4259E-mail: [email protected]



Rhode IslandRhode Island Birth Defects Surveillance Program

Purpose: surveillance, service, preventionPartner: hospital, child program, advocacyProgram status: Currently collecting dataStart year: 2000Earliest year of available data: 1997Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 12,500Statewide: yesCurrent legislation or rule: Title 23, Chapter 13.3 ofRhode Island General Laws requires the development ofa birth defects surveillance, reporting and informationsystem that will: a) describe the occurrence of birthdefects in children up to age five; b) detect trends ofmorbidity and mortality; and c) identify newborns andchildren with birth defects to intervene on a timely basisfor treatment.Legislation year enacted: 2003

Case DefinitionOutcomes covered: major birth defects and geneticdiseasesPregnancy outcome: live births (all gestational ages andbirth weights)Age: Currently at birthResidence: RI residents

Surveillance methodsCase ascertainment: Currently, passive caseascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death fileOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, RI has anintegrated database called KIDS NET, which links datafrom 9 programs including: Universal NewbornDevelopmental Risk Screening; Universal NewbornHearing; Newborn Bloodspot Screening; EarlyIntervention; Immunization; Lead Poisoning; WIC; HomeVisiting and Vital RecordsDelivery hospitals: discharge summaries, ICU/NICUlogs or chartsPediatric & tertiary care hospitals: specialty outpatientclinicsOther specialty facilities: genetic counseling/clinicalgenetic facilities

Case AscertainmentConditions warranting chart review in newborn period:Chart reviews are conducted for every newbornidentified with a birth defect.Coding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic information

Mother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources, data/hospital audits, clinicalreviewData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, needs assessment, service delivery, referral,grant proposals, education/public awareness

System IntegrationSystem links: state registry, KIDSNET (UniversalNewborn Developmental Risk Screening; UniversalNewborn Hearing; Newborn Bloodspot Screening; EarlyIntervention; Immunization; Lead Poisoning; WIC; HomeVisiting; and Vital Records); hospital discharge database

FundingFunding source: MCH funds 60%, CDC grant 40%, Note:CDC Grant � no cost extension $ from birth defectssurveillance grant

Contact(s)Samara Viner-Brown, MSChief of Data & EvaluationRhode Island Department of Health3 Capitol Hill, Room 302Providence, RI 02908-5097Phone: 401-222-5935; Fax: 401-222-1442E-mail: [email protected]

Michele Quaedvlieg, ASData ManagerRhode Island Department of Health3 Capitol Hill, Room 302Providence, RI 02908-5097Phone: 401-222-4631; Fax: 401-222-1442E-mail: [email protected]



South CarolinaSouth Carolina Birth Defects Surveillance And Prevention Program

Purpose: surveillance, research, servicePartner: Department of Health, university, hospitalProgram status: Currently collecting dataStart year: 1992Earliest year of available data: 1993Organizational location: Greenwood Genetic CenterPopulation covered annually: 55,873Statewide: yes

Case DefinitionOutcomes covered: Neural Tube DefectsPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminations (less than 20week gestation, 20 weeks gestation and greater)Age: Up to one year after deliveryResidence: In and out of state births to residents of SouthCarolina

Surveillance methodsCase ascertainment: Combination of active and passivecase ascertainmentCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificates, electivetermination certificatesOther state based registries: programs for children withspecial needs, AutopsyDelivery hospitals: disease index or discharge index,discharge summaries, postmortem/pathology logs,specialty outpatient clinics, ICD-9 CodesPediatric & tertiary care hospitals: dischargesummaries, specialty outpatient clinicsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, maternal serumscreening facilitiesOther sources: physician reports

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 655.00-755.9 any chartwith selected defects or medical conditions ie abnormalfacies, congenital heart disease, limb reduction defects,all prenatal diagnosed or suspected casesCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-

of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreviewData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, needs assessment, grantproposals, education/public awareness, preventionprojects

FundingFunding source: general state funds 35%, CDC grant 20%,other federal funding 35%, March of Dimes 10%

OtherWeb site: Http://www.ggc.orgProcedure manual available: yes

Contact(s)Roger E. Stevenson, MDDirector: SC BD Surveillance & Prevention ProgramGreenwood Genetic Center1 Gregor Mendel CircleGreenwood, SC 29646Phone: 864-941-8146 Fax: 864-388-1707E-mail: [email protected]

Jane H. Dean, RNProgram CoordinatorGreenwood Genetic Center1 Gregor Mendel CircleGreenwood, SC 29646Phone: (864) 941-8138 Fax: (864) 388-1707E-mail: [email protected]



South Dakota


Contact(s)Quinn Stein, MS, CGCGenetic CounselorSioux Valley Children’s Specialty Clinic1305 W 18th St.Sioux Falls, SD 57117Phone: 605-333-4298; Fax: 605-333-1585E-mail: [email protected]



TennesseeTennessee Birth Defects Registry (TBDR)

Purpose: surveillance, research, service, preventionPartner: hospital, child program, advocacy, legislatorProgram status: Currently collecting dataStart year: 2000Earliest year of available data: 2000Organizational location: Department of Health(Research)Population covered annually: 80,000Statewide: yesCurrent legislation or rule: TCA 68-5-506Legislation year enacted: 2000

Case DefinitionOutcomes covered: Major Birth DefectsPregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (a fetal death 500 grams or more, or in theabsence of weight, of 22 completed weeks of gestation ormore)Residence: in and out state births to state resident

Surveillance methodsCase ascertainment: hospital records matched to vitalrecords, population basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: newborn hearing screeningprogram, newborn metabolic screening programDelivery hospitals: disease index or discharge index,discharge summariesPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, 760.71Coding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name,address, date-of-birth, etc.), demographicinformation (race/ethnicity, sex, etc.), birthmeasurements (weight, gestation, Apgars, etc.), testsand procedures, infant complications, birth defectdiagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)

Data Collection Methods and StorageDatabase storage/management: MS Access, SQL Server

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, double-checking of

assigned codes, comparison/verification betweenmultiple data sourcesData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,monitoring outbreaks and cluster investigations,observed vs expected analyses, needs assessment, servicedelivery, grant proposals, education/public awareness,prevention projects

FundingFunding source: general state funds 94%, privatefoundations 6%

Contact(s)David J. Law, PhDDirector, Tennessee Birth Defects RegistryTN Dept. of Health - PPA425 Fifth Avenue North, 4th Flr.Nashville, TN 37247Phone: 615-253-4702; Fax: 615-253-1688E-mail: [email protected]



TexasTexas Birth Defects Monitoring Division (TBDMD)

Purpose: surveillance, research, service, preventionPartner: university, hospital, advocacyProgram status: Currently collecting dataStart year: 1994Earliest year of available data: 1996Organizational location: Department of Health(Epidemiology/Environment)Population covered annually: 365,000Statewide: yesCurrent legislation or rule: Health and Safety Code, Title2, Subtitle D, Section 1, Chapter 87.Legislation year enacted: 1993

Case DefinitionOutcomes covered: All major structural birth defects andfetal alcohol syndromePregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (less than 20 week gestation, 20 weeksgestation and greater), elective terminationsAge: Up to one year after delivery - FAS up to 6 yearsResidence: In-state births to state residents.

Surveillance methodsCase ascertainment: Active, population-basedCase finding/identification sources:Delivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor & delivery),regular nursery logs, ICU/NICU logs or charts, pediatriclogs, postmortem/ pathology logs, surgery logs, cardiaccatheterization laboratories, specialty outpatient clinics,Genetics logs, stillbirth logs, radiology logsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, pediatric logs, postmortem/pathology logs,surgery logs, laboratory logs, cardiac catheterizationlaboratories, specialty outpatient clinics, genetics logs,radiology logsMidwifery facilities: YesOther sources: licensed birthing centers

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart with aselected list of ICD9-CM codes outside 740-759, any chartwith selected procedure codes, any chart with selecteddefects or medical conditions ie abnormal facies, congenitalheart disease, �34 weeks GA, all stillborn infantsConditions warranting a chart review beyond thenewborn period: CNS condition (e.g. seizure), GIcondition (e.g. intestinal blockage), GU condition (e.g.recurrent infections), cardiovascular condition, any infantwith a codable defectCoding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information

(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnostic informationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenataldiagnostic information, pregnancy/deliverycomplications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity, sex, etc.)

Data Collection Methods and StorageDatabase storage/management: SQL Server

Data AnalysisData analysis software: SPSS, SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, clinical review,timeliness, re-casefinding, re-review of medical recordsData use and analysis: baseline rates, rates bydemographic and other variables, monitoring outbreaksand cluster investigations, time trends, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, referral,grant proposals, education/public awareness

System IntegrationSystem links: Link registry to vital records fordemographic data

FundingFunding source: general state funds 51%, MCH funds 33%,Preventive Health block grant 16%, Note: does not includeCDC-funded Texas Birth Defects Research Center funds

OtherWeb site: http://www.tdh.state.tx.us/tbdmd/index.htmSurveillance reports on file: Report of Birth DefectsAmong 1995 Deliveries. 1996 Birth Defects in the LowerRio Grande Valley. Report of Birth Defects Among 1996and 1997 Deliveries. Report of Birth Defects Among 1998and 1999 Deliveries, Among 1999 and 2000 Deliveries.Procedure manual available: yesAdditional information on file: copy of legislation; TexasBirth Defects Monitoring Division fact sheet; TexasCenter for Birth Defects Research and Prevention factsheet; Fetal Alcohol Syndrome brochure (English andSpanish); Pregnancy Outcome Patterns for VariousDefects; Impact of Including Induced PregnancyTerminations Before 20 Weeks Gestation on Birth DefectRates; Birth Defects Glossary; Recent Trends in NeuralTube Defects in Texas.Comments: Statewide as of 1999 deliveries. Until 2000, theTexas Department of Health also had the Texas NeuralTube Defect Surveillance and Intervention Project along theTexas border with Mexico, which conducted active



surveillance and research on neural tube defects for 14counties.

Contact(s)Mark A. Canfield, PhDDirectorTexas Birth Defects Monitoring Division1100 West 49th StreetAustin, TX 78756-3180Phone: 512-458-7232; Fax: 512-458-7330E-mail: [email protected]

Peter Langlois, PhDSenior EpidemiologistTexas Birth Defects Monitoring Division1100 West 49th StreetAustin, TX 78756-3180Phone: 512-458-7232; Fax: 512-458-7330E-mail: [email protected]



UtahUtah Birth Defect Network (UBDN)

Purpose: surveillance, research, service, preventionPartner: university, hospital, advocacyProgram status: Currently collecting dataStart year: 1994Earliest year of available data: 1994Organizational location: Department of Health,UniversityPopulation covered annually: 50,000Statewide: yesCurrent legislation or rule: Birth Defect Rule (R398-5)Legislation year enacted: 1999

Case DefinitionOutcomes covered: 742.000 - 759.000Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater), pregnancyterminations (occuring at any gestational week)Age: 2Residence: Maternal residence in Utah at time of delivery

Surveillance methodsCase ascertainment: Population-based combination ofactive/passive – all medical records are reviewed for allreported poential casesCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificatesDelivery hospitals: disease index or discharge index,discharge summaries, obstetrics logs (i.e., labor &delivery), newborn nursery logs, ICU/NICU logs orcharts, postmortem/pathology logs, specialty outpatientclinics, Champions report live births delivered at theirrespective hospitalsPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, ICU/NICU logsor charts, postmortem/pathology logs, surgery logs,specialty outpatient clinicsOther specialty facilities: prenatal diagnostic facilities(ultrasound, etc.), cytogenetic laboratories, geneticcounseling/clinical genetic facilities, physician reports,lay midwives

Case AscertainmentConditions warranting chart review in newborn period:any fetus or infant with a ICD9-CM code 740-759suggesting an eligible birth defect, any chart with selecteddefects or medical conditions (i.e. abnormal facies,congenital heart disease, any birth certificate with a birthdefect box checked, all stillborn infants with suggestedminor or major malformations), all neonatal deaths, allinfants in NICU or special care nursery, all prenataldiagnosed or suspected cases, all fetal deaths certificates,NICU reports, infant deaths are reviewedConditions warranting a chart review beyond thenewborn period: any infant with a codable defect aslisted above.Coding: CDC coding system based on BPA

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information

(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), tests and procedures, infantcomplications, birth defect diagnosticMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: Microsoft Access 2000

Data AnalysisData analysis software: Epi2000, SAS, Microsoft Access,StatviewQuality assurance: logiscal checks, duplicate check intracking and surveillance module, case record formchecked for completeness, comparison/verificationbetween multiple data sources, clinical review, timelinessthrough system, manual review of subset of surveillancemodule case data compared to case record form.Data use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, epidemiologic studies (using only programdata), identification of potential cases for otherepidemiologic studies, referral, grant proposals,education/public awareness, prevention projects, OralFacial Cleft Case-Control Study, and Utah Center forBirth Defects Research and Prevention


OtherWeb site: health.utah.gov/birthdefectSurveillance reports on file: 1994 NTD Surveillance, 1994-1996 registry reportProcedure manual available: yesAdditional information on file: Data Sharing Protocol

Contact(s)Marcia Lynn Feldkamp, PA, MSPHDirectorUtah Birth Defects Network44 North Medical Dr/POBox 144697Salt Lake City, UT 84114-4697Phone: 801-257-0566 ext 203; Fax: 801-257-0572E-mail: [email protected]

Lynne Margaret MacLeod, M.StatSurveillance Project CoordinatorUtah Birth Defects Network44 N Medical Drive/POBox 144697Salt Lake City, UT 84114-4697Phone: 801-257-0566 ext 202; Fax: 801-257-0572E-mail: [email protected]



VermontBirth Information Network

Purpose: surveillance, service, preventionPartner: Department of Health, university, hospital,advocacyProgram status: Program has not started collecting datayetOrganizational location: Department of Health(Statistics)Population covered annually: 6500Statewide: yesCurrent legislation or rule: Act 32Legislation year enacted: 2003

Case DefinitionOutcomes covered: major birth defects and geneticdiseases, very low birthweight (less than 1500 grams)Age: up to one year after deliveryResidence: in and out of state births to state residents

Contact(s)Peggy BrozicevicResearch & Statistics ChiefVermont Department of HealthP.O. Box 70; 108 Cherry StreetBurlington, VT 05402Phone: 802-863-7298; Fax: 802-865-7701E-mail: [email protected]

John BurleyPublic Health Analyst IIIVermont Department of HealthP.O. Box 70; 108 Cherry StreetBurlington, VT 05402Phone: 802-863-7611; Fax: 802-865-7701E-mail: [email protected]



VirginiaVirginia Congenital Anomalies Reporting And Education System (VACARES)

Purpose: surveillancePartner: university, hospital, child programProgram status: Currently collecting dataStart year: 1985Earliest year of available data: 1987Organizational location: Pediatric Screenings andGenetic Services, Div. of Child and Adolescent HealthPopulation covered annually: Calendar Year 2002-98,864Statewide: yesCurrent legislation or rule: Health Law 32.1-69.1,-69.1:1,-69.2Legislation year enacted: 1985, ammended 1986, 1988

Case DefinitionOutcomes covered: Major Birth defects and geneticdiseasesPregnancy outcome: live births (all gestational ages andbirth weights)Age: below 24 months of ageResidence: In and out-of-state births to state residents

Surveillance methodsCase ascertainment: Passive, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death fileOther state based registries: newborn hearing screeningprogram, newborn biochemical screening programDelivery hospitals: discharge summaries, Medicalrecords abstracts codes from chartsPediatric & tertiary care hospitals: dischargesummaries, Medical Records abstracts codes from charts

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha selected list of ICD9-CM codes outside 740-759, anychart with selected defects or medical conditions ieabnormal facies, congenital heart disease, any birthcertificate with a birth defect box checked, all neonataldeaths, Chart review is done by the coders in HealthInformation ManagementConditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: ICD-9-CM, ICD-10 for death certificate

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, double-checking ofassigned codes, comparison/verification betweenmultiple data sources, data/hospital audits, timelinessData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, epidemiologic studies (using only programdata), needs assessment, service delivery, referral, grantproposals, education/public awareness, preventionprojects

System IntegrationSystem links: state registrySystem integration: The current system, Virginia InfantScreening and Infant Tracking System (VISITS), is anintregrated database that tracks screening results forVaCARES and the following programs and services:Virginia Newborn Hearing Screening Program, VirginiaNewborn Screening Services (future) and At RiskReferral Service (pilot).


OtherWeb site: www.vahealth.org/geneticsSurveillance reports on file: A 10-Year report (1989-1998)was published in 2002.Procedure manual available: yesAdditional information on file: Oracle databaseComments: As of March 2004, most hospitals areentering data directly into database from the hospitalcontacts via Virginia Infant Screening and InfantTracking Program (VISITS), a web-based tracking anddata management system.

Contact(s)Sharon K. Williams, MS, RNVirginia Genetics Program ManagerVirginia Department of Health109 Governor Street, 8th FloorRichmond, VA 23219Phone: 804-864-7712; Fax: 804-864-7721E-mail: [email protected]

Nancy C. Ford, MPH,RNDirector, Pediatric Screening and Genetic ServicesVirginia Department of Health109 Governor Street, 8th FloorRichmond, VA 23219Phone: 804-864-7691; Fax: 804-864-7721E-mail: [email protected]



WashingtonWashington State Birth Defects Surveillance System (BDSS)

Purpose: surveillance, servicePartner: university, hospitalProgram status: Currently collecting dataStart year: 1986- Active and 1991- PassiveEarliest year of available data: 1987Organizational location: Department of Health(Maternal and Child Health)Population covered annually: 80,000Statewide: yesCurrent legislation or rule: Notifiable Conditions: WAC246-101Legislation year enacted: 2000

Case DefinitionOutcomes covered: From 1987 to 1991 (activesurveillance), and from 1991 to the 2000 (passivesurveillance), the cases reportable to the Birth DefectsRegistry included those with ICD-9-CM codes 740-759,selected primary cancers, selected metabolicconditions, and FAS/FAE. Since the adoption of theNotifiable Conditions law in 2000, conditions subjectto mandatory reporting are neural tube defects,orofacial clefts, limb deficiencies, abdominal walldefects, hypospadias/epispadias and Down syndrome.FAS/FAE, Cerebral Palsy and Autism are designatedas provisionally reportable with systems beingestablished to ascertain cases outside the hospitalsetting.Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater)Age: to age 4 years historically; We are transitioning toascertainment through 1 year of age for structural defectsand to age eight for FAS/FAE, Cerebral Palsy andAutism.Residence: resident births; children born or diagnosedin-state

Surveillance methodsCase ascertainment: passiveCase finding/identification sources:Vital records: birth certificates, death certificates, fetaldeath certificates, elective termination certificatesDelivery hospitals: disease index or discharge indexPediatric & tertiary care hospitals: disease index ordischarge indexOther sources: Currently developing data sharing withUniversity-based FAS/FAE clinic.

Case AscertainmentCoding: ICD-9-CM, FAS/FAE coding scheme will beutilized in data collection and case description for FAS/FAE cases.

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.)

Father: identification information (name, address, date-of-birth, etc.)

Data Collection Methods and StorageDatabase storage/management: Web-based SQL server

Data AnalysisData analysis software: SAS, MS AccessQuality assurance: validity checks, re-abstraction ofcases, comparison/verification between multiple datasources, data/hospital audits, timelinessData use and analysis: routine statistical monitoring,baseline rates, monitoring outbreaks and clusterinvestigations, time trends, observed vs expectedanalyses, service delivery, grant proposals, education/public awareness, prevention projects

FundingFunding source: general state funds 40%, MCH funds60%

OtherSurveillance reports on file: Brighter Futures reportavailable for 1987-1988 data; Available by June 2004Washington State Birth DefectsSurveillance System: Status Report 1995 — 2002Procedure manual available: yes

Contact(s)Riley Peters, PhDManager, MCH AssessmentWashington Dept. of Health; Maternal and ChildHealthP.O. Box 47835Olympia, WA 98504-7835Phone: 360-236-3553; Fax: 360-236-2323E-mail: [email protected]



West VirginiaWest Virginia Congenital Abnormalities Registry, Education And Surveillance System (WVCARESS)

Purpose: surveillance, service, preventionPartner: university, hospital, child program, advocacyProgram status: Currently collecting dataStart year: 1989Earliest year of available data: 1989Organizational location: Department of Health(Epidemiology/Environment), Department of Health(Vital Statistics), Department of Health (Maternal andChild Health)Population covered annually: 21,000Statewide: yesCurrent legislation or rule: State Statute Section 16-5-12aLegislation year enacted: 1991State Stature Section 16-40-1Legislation updated: 2002

Case DefinitionOutcomes covered: Congenital anomalies of ICD-9 codes740-759, 760, 764, 765, 766Pregnancy outcome: (all gestational ages and birthweights), fetal deaths—stillbirths, spontaneous abortions,etc. (20 weeks gestation and greater), (all gestational agesand birth weights), elective terminations (20 weeksgestation and greater)Age: 0-6Residence: In and out of state births to state residents

Surveillance methodsCase ascertainment: active, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificates, electivetermination certificatesOther state based registries: programs for children withspecial needs, newborn hearing screening program,newborn biochemical screening program, cancer registry,AIDS/HIV registry, SIDSDelivery hospitals: Hospital personnel complete BirthDefect Reporting forms, reports also sent from GeneticsProgram.Pediatric & tertiary care hospitals: Hospital personnelcomplete Birth Defect Reporting forms, reports also sentfrom Genetics Program.Other specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports, Pediatric referrals ofchildren diagnosed after delivery and discharge

Case AscertainmentConditions warranting chart review in newborn period: anychart with a ICD9-CM code 740-759, any chart with selectedprocedure codes, any chart with selected defects or medicalconditions ie abnormal facies, congenital heart disease, anybirth certificate with a birth defect box checked, less than 2500grams or less than 37 weeks, all stillborn infants, all neonataldeaths, all elective abortions, all infants with low APGARscores, all infants in NICU or special care nursery, all prenataldiagnosed or suspected casesConditions warranting a chart review beyond thenewborn period: facial dysmorphism or abnormal facies,failure to thrive, developmental delay, CNS condition (ie

seizure), GI condition (ie intestinal blockage), GUcondition (ie recurrent infections), cardiovascularcondition, all infant deaths (excluding prematurity),childhood deaths between 1 and 6, ocular conditions,auditory/hearing conditions, any infant with a codabledefectCoding: ICD-9-CM, ICD-10-CM

Data CollectedInfant/fetus: identification information (name,address, date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements(weight, gestation, Apgars, etc.), tests and procedures,infant complications, birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), gravidity/parity, illnesses/conditions, prenatalcare, prenatal diagnostic information,pregnancy/delivery complications, family historyFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, family history

Data Collection Methods and StorageDatabase storage/management: MS Access, Mainframe,Visual D-Base

Data AnalysisData analysis software: customQuality assurance: validity checks,comparison/verification between multiple data sourcesData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, observed vs expected analyses,epidemiologic studies (using only program data), needsassessment, referral, grant proposals, education/publicawareness, prevention projects

System IntegrationSystem links: Plans are underway to link severalprograms housed in the office of Maternal, Child andFamily Health


OtherWeb site: www.wvdhhr.orgComments: Contact person 3: Jackie Newson, BA;Program Coordinator; 350 Capitol Street, Room 427;Charleston, WV 25301; Phone: 304-58-7258; Fax: 304-558-3510; E-mail: [email protected]

Contact(s)Kathryn G. Cummons, MSWDirector, Research, EvaluationOMCFH350 Capitol St.Charleston, WV 25301Phone: 304-558-7171; Fax: 304-558-3510E-mail: [email protected]



Melissa A. Baker, MAEpidemiologistOMCFH350 Capitol St.Charleston, WV 25301Phone: 304-558-7247; Fax: 304-558-3510E-mail: [email protected]



WisconsinWisconsin Birth Defects Registry (WBDR)

Purpose: surveillance, research, servicePartner: Department of Health, university, hospital, childprogram, advocacyProgram status: Currently collecting dataStart year: 2004Earliest year of available data: 2004Organizational location: Department of Health andFamily Services (CSHCN)Population covered annually: �67,000Statewide: yesCurrent legislation or rule: Statute 253.12HFS 116—Took effect April 1, 2003Legislation year enacted: 2000

Case DefinitionOutcomes covered: Structural malformations,deformations, disruptions, or dysplasias; genetic,inherited, or biochemical diseases.Pregnancy outcome: live births (all gestational ages andbirth weights), fetal deaths—stillbirths, spontaneousabortions, etc. (20 weeks gestation and greater)Age: birth to 2 yearsResidence: Statute mandates reporting of birth defectsdiagnosed or treated in Wisconsin regardless ofresidence status.

Surveillance methodsCase ascertainment: passive, population-basedCase finding/identification sources:Vital records: birth certificates, death certificates,matched birth/death file, fetal death certificatesOther state based registries: newborn hearingscreening program, newborn biochemical screeningprogramPediatric & tertiary care hospitals: Case reports frompediatric specialty clinicsThird party payers: Medicaid databasesOther specialty facilities: genetic counseling/clinicalgenetic facilitiesOther sources: physician reports, hospital discharge datathrough 2 yrs of age

Case AscertainmentCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), birth measurements (weight,gestation, Apgars, etc.), birth defect diagnosticinformationMother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)Father: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.)


Data AnalysisData analysis software: SASQuality assurance: validity checks,comparison/verification between multiple data sourcesData use and analysis: baseline rates, rates bydemographic and other variables, monitoring outbreaksand cluster investigations, time trends, capture-recaptureanalyses, observed vs expected analyses, epidemiologicstudies (using only program data), identification ofpotential cases for other epidemiologic studies, needsassessment, service delivery, referral, grant proposals,education/public awareness, prevention projects, Itemschecked above are the ones likely to be used.

System IntegrationSystem links: Would like to link to birth records, theNewborn Screening Program and the Newborn HearingScreening Program in the future.


OtherWeb site: http://www.dhfs.state.wi.us/dph_bfch/cshcnhttps://www.wbdr.han.wisc.eduSurveillance reports on file: Birth and DevelopmentalOutcome Monitoring Program 1990-91,Birth andDevelopmental Outcome Monitoring Program 1990-94Comments: The new program requires completespecification through an Advisory Council andAdministrative Rule. The Council meets quarterly.Administrative rules took effect April 1, 2003.

Contact(s)Elizabeth OftedahlCSHCN EpidemiologistDivision of Public Health, Department of Health andFamily Services1 West Wilson, PO Box 2659Madison, WI 53701Phone: 608-261-9304; Fax: 608-267-3824E-mail: [email protected]

Peggy Helm-Quest, MSEd, MHA, CHESCSHCN SupervisorDivision of Public Health, Department of Health andFamily Services1 West Wilson, PO Box 2659Madison, WI 53701Phone: 608-267-2945; Fax: 608-267-3824E-mail: [email protected]



Wyoming

Program status: Interested in developing a surveillanceprogram

Contact(s)Dorothy Ailes, RN-C, MSN, PNPProgram Manager, Children Special HealthWY Department of Health, Community and FamilyHealth Div.4020 House AvenueCheyenne, WY 82002Phone: 307-777-5413; Fax: 307-777-7215E-mail: [email protected]



US Department of DefenseUnited States Department Of Defense (DoD) Birth And Infant Health Registry

Purpose: surveillance, researchPartner: university, hospital, CDCProgram status: Currently collecting dataStart year: 1998Earliest year of available data: 1998Organizational location: Department of Defense Centerfor Deployment Health Research, Naval Health ResearchCenter, San Diego, CAPopulation covered annually: approx 90,000 per yearStatewide: No: Nation/World; Department of Defense(DoD) beneficiaries, includes all uniformed servicespersonnel who are eligible for health care benefitsCurrent legislation or rule: Assistant Secretary ofDefense, Health Affairs Policy MemorandumLegislation year enacted: 1998

Case DefinitionOutcomes covered: CDC-recommended major birthdefectsPregnancy outcome: live births (all gestational ages andbirth weights)Age: Birth to 1 yearResidence: Worldwide; any birth to a US militarybeneficiary

Surveillance methodsCase ascertainment: Electronic diagnostic codes from allinpatient and outpatient healthcare encounters of USmilitary beneficiaries, combination, population-basedCase finding/identification sources:Delivery hospitals: disease index or discharge index,discharge summaries, specialty outpatient clinics, Allinpatient and outpatient encounters are captured instandardized DoD dataPediatric & tertiary care hospitals: disease index ordischarge index, discharge summaries, specialtyoutpatient clinics, All inpatient and outpatientencounters are captured in standardized DoD dataThird party payers: All inpatient and outpatientencounters are captured in standardized DoD dataOther sources: Validation of standardized electronic datais performed by active case ascertainment and chartreview of a random sample of births from both militaryand civilain facilities.

Case AscertainmentConditions warranting chart review in newborn period:any chart with a ICD9-CM code 740-759, any chart witha CDC/BPA code, Validation of standardized electronicdata is performed by active case ascertainment and chartreview of a random sample of births from both militaryand civilain facilities.Conditions warranting a chart review beyond thenewborn period: any infant with a codable defectCoding: ICD-9-CM

Data CollectedInfant/fetus: identification information (name, address,date-of-birth, etc.), demographic information(race/ethnicity, sex, etc.), tests and procedures, infantcomplications, birth defect diagnostic information

Mother: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions, prenatal diagnosticinformation, pregnancy/delivery complicationsFather: identification information (name, address, date-of-birth, etc.), demographic information (race/ethnicity,sex, etc.), illnesses/conditions

Data Collection Methods and StorageDatabase storage/management: MS Access, SAS

Data AnalysisData analysis software: SASQuality assurance: validity checks, re-abstraction ofcases, double-checking of assigned codes, comparison/verification between multiple data sources, clinicalreviewData use and analysis: routine statistical monitoring,baseline rates, rates by demographic and other variables,time trends, observed vs expected analyses,epidemiologic studies (using only program data),identification of potential cases for other epidemiologicstudies, grant proposals, prevention projects

System IntegrationSystem links: DoD databasesSystem integration: DoD databases

FundingFunding source: other federal funding 100%

OtherWeb site: http://www.nhrc.navy.mil/rsch/code25/projects/birthdefects.htmSurveillance reports on file: DoD/HA policymemorandum; Technical Reports

Contact(s)Margaret Ryan, MD, MPHDirector, DoD Birth and Infant Health RegistryDoD Center for Deployment Health Research, Code 25,Naval Health Research CenterP.O. Box 85122San Diego, CA 92186-5122Phone: 619-553-8097; Fax: 619-553-7601E-mail: [email protected]

Rosha Aran, BSCoordinatorDoD Birth and Infant Health RegistryNHRC, PO Box 85122San Diego, CA 92186-5122Phone: 619-553-9255; Fax: 619-553-7601E-mail: [email protected]



state birth defects surveillance program directory · suggested reference: national birth defects...

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