texas cancer registry and cancer reporting · texas cancer registry vision: a cancer-free texas....

Texas Cancer Registry and Cancer Reporting

Overview

ObjectivesBy the end of this training, you should be able to discuss:• Purpose and goals of Texas Cancer Registry (TCR)

• Cancer Reporting Handbook• Cancer reporting & the law• Confidentiality and HIPAA• Collaborative stage transition• Reporting compliance

2/8/2019 TCR and Cancer Reporting Overview 2

Texas Cancer RegistryVision: A cancer-free Texas.

Mission: To collect, maintain, and disseminate high quality cancer data that contribute towards cancer prevention and control, research, improving diagnoses, treatment, survival, and quality of life for all cancer patients.

Philosophy: The TCR strives to: • Maintain a high quality nationally certified statewide

population-based cancer registry with complete, timely, and accurate data.

• Meet the data needs of Texans, including public health officials, healthcare practitioners, cancer researchers, health planners, advocacy groups, the public, and other local, state, and national entities.

• Make a significant contribution to the fight against cancer.

2/8/2019 3TCR and Cancer Reporting Overview

Estimated Cancer Incidence & Mortality• In 2019, there are an estimated 1,762,450 new cancer cases diagnosed and 606,640 cancer deaths in the United States.1

• In Texas, there were an estimated 124,890 new cancer cases diagnosed and 41,300 cancer deaths in Texas this year.2

American Cancer Society

1 Cancer Facts & Figures 2018. American Cancer Society.2 2018 Texas Expected Cases and Deaths. Texas Cancer Registry.


TCR Websitehttps://dshs.texas.gov/tcr


Web Query ToolUsers can create customized maps and tables of Texas cancer incidence or mortality rates.


TCR Statistics• 4th largest US cancer registry

• 550 reporting facilities

• 98% of facilities report electronic

• 248,000 records received each year

• 119,000 unique cases each year

• 400 data requests received each year


Ethics

All Staff sign a confidentiality agreement after one on one or small group counseling on privacy, security, the law including HIPAA, and ethics.

All research requests are thoroughly vetted.


Online Reporting Tools• 2017 Cancer Reporting Handbook

http://www.dshs.texas.gov/tcr/training/2017-handbook.aspx

• SEER Hematopoietic and Lymphoid Coding Manual and Databasehttp://seer.cancer.gov/seertools/hemelymph

• Facility Oncology Registry Data Standards (FORDS): Revised for 2016https://www.facs.org/quality-programs/cancer/ncdb/registrymanuals/cocmanuals/fordsmanual

• AJCC Cancer Staging Manual 7th Edition should be used for cases diagnosed on or after January 1, 2010. AJCC 8th Edition is effective for cases diagnosed on or after January 1, 2018.https://cancerstaging.org/CSE/Registrar/Pages/default.aspx


Online Reporting Tools (continued)• SEER*Rx Interactive Antineoplastic Drug Database

http://seer.cancer.gov/seertools/seerrx

• SEER Program Manualhttp://www.seer.cancer.gov/tools/codingmanuals

• 2007 Multiple Primary & Histology Coding Ruleshttp://www.seer.cancer.gov/tools/mphrules/download.html

• ICD-O-3 Book (The online version is updated and should only be used for cases diagnosed in 2018.) http://codes.iarc.fr

• SEER Summary Stage 2000 Manualhttp://seer.cancer.gov/tools/ssm/SSSM2000-122012.pdf


Online Reporting Tools (continued)

For cases diagnosed in 2018:• SEER program Coding and Staging Manual 2018

https://seer.cancer.gov/manuals/2018/SPCSM_2018_maindoc.pdf• Solid Tumor Rules 2018

https://seer.cancer.gov/tools/solidtumor/• SEER Summary Stage 2018

https://seer.cancer.gov/tools/ssm/SSM2018-General-Instructions.pdf• SSDI and Grade Manual

https://apps.naaccr.org/ssdi/list/• Hematopoietic and Lymphoid Neoplasm Coding Manual

https://seer.cancer.gov/tools/heme/Hematopoietic_Instructions_and_Rules.pdf

•2/8/2019 •TCR and Cancer Reporting Overview •11

TCR Training ResourcesThe TCR training website includes links to training resources, including NAACCR updates, AJCC trainings and websites frequently used by cancer reporters.

http://www.dshs.texas.gov/tcr/training_resources.shtm


Printed Reporting Tools

• AJCC 7th Edition• SEER Summary Stage 2000

• Multiple Primary and Histology (MP/H) Rules

• FORDS: Revised for 2017

132/8/2019 TCR and Cancer Reporting Overview

Web PlusThe TCR Registry uses the web-based application Web Plus to receive and share cancer case records.

The benefits of using Web Plus include:• No software to install• Secure sharing• Online abstracting• File sharing• Editing in app


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Using Web Plus

TCR and Cancer Reporting Overview

Cancer Reporting Handbook• Introduction • Standards • Casefinding• Demographics • Cancer Information • Staging• Treatment Information

• Text Documentation• Appendices


National Cancer Act

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The National Cancer Act of 1971 created a national cancer program and expanded the National Cancer Institute (NCI).


It also provided a mandate to collect, analyze and disseminate data to aid in the prevention, diagnosis and treatment of cancer in the U.S.

Texas Cancer Control Act (1979)This state legislation established the Cancer Registry Program within the Texas Department of Health (now the Texas Department of State Health Services), making cancer a reportable disease.

The purpose of the program was to:• provide an accurate and continuing source of data

concerning cancer and certain specified precancerous and tumorous diseases

• compile statistics to help in the early recognition, prevention, cure, or control of cancer.


Texas Cancer Incidence Reporting ActUnder chapter 82 of the Health & Safety Code (amended 9/2001), the following health care facilities must report cancer cases to the Texas Cancer Registry:

• Hospitals• Clinical Laboratories• Cancer Treatment Centers• Health Care Practitioners• Ambulatory Surgical Centers


Confidentiality and HIPAA

• HIPAA allows for reporting of cancer data to central cancer registries.

• No individual or facility reporting will be held criminally liable for reporting to the TCR as required by law.


Standard Setters• Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR)

• NCI Surveillance Epidemiology and End Results (SEER)

• North American Association of Central Cancer Registries (NAACCR)

• Commission on Cancer (CoC) National Cancer Database (NCDB)

• National Cancer Registrars Association


• Each year, the standard setters issue changes to reporting. TCR adheres to the requirements set by the National Program of Cancer Registries (NPCR)

• The TCR Cancer Registry Handbook is issued based on changes received from standard setters.

• Some data fields may be changed, added or deleted in Web Plus or your registry software.

• NAACCR Version 16 should be used unless otherwise instructed by TCR staff.

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Reporting Changes


2017 Updates• NCI SEER -- The codes and instructions in the 2016 SEER

Program Coding and Staging Manual remain in effect for 2017

• CoC -- Beginning with cases diagnosed January 1, 2017, the CoC will continue using the record layout and data collection requirements as published in NAACCR Standards Volume II, Version 16. There are no changes to CoC reporting requirements for 2017.

• MP/H Rules -- The Solid Tumor Rules (previously known as the MP/H Rules) and the Hematopoietic Database and Manual will be updated for 2018 cases. The updated rules will reflect changes to ICD-O-3 based on updates of the WHO Classification of Tumors (Blue Books), AJCC 8th Edition Staging Manual, and clarifications to current rules.

• NAACCR Implementation Information --https://www.naaccr.org/2018-implementation/#Rules


2018 NCI SEER Updates• Use the 2018 Solid Tumor coding rules to determine the

number of primaries to abstract and the histology to code for cases diagnosed in 2018 and forward. The Solid Tumor coding rules replace the 2007 MP/H Rules.

• All of the standard setting organizations will collect the predictive and prognostic factors through Site Specific Data Items (SSDIs). Unlike the SSFs, these data items have formats and code structures specific to the data item.

•2/8/2019 TCR and Cancer Reporting Overview •24

2018 NAACCR Updates• Beginning with cases diagnosed in 2018, grade

information will be collected in three fields: Clinical Grade, Pathological Grade, and Post-Therapy Grade. In the Grade Manual you will find definitions for the three new grade data items, coding instructions, and the site/histology specific grade tables.

• The revised 2018 Guidelines for ICD-O-3 Histology Code and Behavior Update for cases diagnosed January 1, 2018 and later are now available on the NAACCR website. The update includes links to tables listing new codes and other changes and is available in two formats: PDF and Excel. Also available are the 2018 ICD-O-3 Update Guidelines and 1/10/2018 Errata/Change document.

• For more information, visit https://www.naaccr.org/2018-implementation/#Stage.


2018 AJCC Updates • AJCC Cancer Staging Manual, 8th Edition is used for cases diagnosed on or

after January 1, 2018. New staging rules apply to assignment of the T category for in situ neoplasia, carcinoma in situ and melanoma in situ. The clinical T category will now be cTis and pathological T category will be pTis. This does not apply to cases staged with previous editions prior to 2018. Starting in 2018 for the 8th Edition, other valid T and N categories with the appropriate c and p prefix will be introduced.

• The breast cancer chapter for the 8th Edition was validated and updated with breast cancer staging system using an additional year's worth of data from the NCDB.

• The AJCC Cancer Stagin g Form Supplement includes 104 printable staging forms for each distinct staging system published by the American College of Surgeons. Forms can be used by physicians to record data on T, N, and M categories, prognostic stage groups, prognostic factors, histologic grade, and other important information. These forms may be useful for recording information in the medical record and for sharing information with the cancer registrar. For more information, visit https://cancerstaging.org/references-tools/deskreferences/Pages/Cancer-Staging-Forms.aspx


TCR Handbook Sources• SEER Program Coding and Staging Manual

• FORDS Manual

• NAACCR Standards for Cancer Registries, Volume II

• ICD-O-3

• Multiple Primary and Histology Rules

• Hematopoietic and Lymphoid Neoplasm Manual and Database


ComplianceAll cancer cases must be submitted within 6 months of:

• Initial diagnosis date, or • First admission with active disease, or • Admission for the treatment of cancer

*Cancer reporting rules require weekly submissions from health care facilities with an annual caseload of greater than 400 and monthly submissions for health care facilities with an annual caseload of 400 or fewer.

*This is a very recent change.


Data Submission Calendar


Cases Admitted in: Should be Reported the Following:

January JulyFebruary August

March SeptemberApril OctoberMay NovemberJune DecemberJuly January

August FebruarySeptember March

October AprilNovember MayDecember June

Collaborative Stage Transition• Collaborative Stage ended in 2015.

• For cases diagnosed on January 1, 2016 or later, all cases will be directly assigned SEER Summary Stage 2000, TNM data items, and AJCC stage group.

• The TCR is still collecting site-specific factors (SSF). Please refer to the TCR website for required ones.


Annual Calls for Data• NAACCR

• Preliminary submission at the beginning of the year

• Final submission at the end of the year• NPCR – submission once a year• Data for 2016 was submitted at the end of 2018. The two-year gap allows the TCR to:• Carefully process and clean data• Check for duplicate cases and coding

errors


TCR Funding Sources• Federal Grant funding – CDC

• State agency funding• Texas Department of State Health Services• Texas Health and Human Services Commission• Cancer Prevention and Research Institute of

Texas


CHI Organization

Community Health Improvement—

Manda Hall, MD

Maternal & Child Health

—Manda Hall, MD

Environmental Epidemiology &

Disease Registries—

Heidi Bojes, PhD, MPH

Vital Statistics—

Tara Das, PhD, MPH, MLIS

Health Promotion &

Chronic Disease

—David Auzenne,

MPH


Commissioner Public Health (DSHS)

—John Hellerstedt, MD

HHS Executive Commissioner—

Cecile Young

TCR Organization

Cancer Epidemiology and Surveillance Branch

Southwest Texas Registry

Operations GroupNortheast Texas

Registry Operations

Group

Quality Assurance

Group

Epidemiology Group


Environmental Epidemiology & Disease

Registries

Staffing• Branch Manager • Budget Analyst• Graphic Design & Web management• Data handler (Web Plus extraction, run through GenEdits to

check for # cases, errors, SAS, upload to TCR database)• Programmers• Statisticians• QA for consolidation and data quality improvement, edits• Death clearance• Regional Managers, Team Leads, Staff (11 HSRs in Texas)• Statewide data acquisition• Statewide compliance monitoring• Trainers• Epidemiologists & Research Specialists (scientists and

biostatisticians)2/8/2019 TCR and Cancer Reporting Overview 35

Master Context Diagram


SummaryYou should now be able to discuss:• Purpose and goals of Texas Cancer Registry (TCR)

• Cancer Reporting Handbook• Cancer reporting & the law• Confidentiality and HIPAA• Collaborative stage transition• Reporting compliance


Thank you

•2/8/2019•[email protected]

•38

Your contact information here

texas cancer registry and cancer reporting · texas cancer registry vision: a cancer-free texas....

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