in collaboration with newsteps: data collection efforts at the national level for newborn screening...
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In Collaboration with
NewSTEPs: Data collection efforts at the national level for newborn screening quality improvementMarci K Sontag, PhDNewSTEPs (Newborn Screening Technical assistance and Evaluation Program
In Collaboration with
VisionDynamic newborn screening systems have access to and utilize accurate, relevant information to achieve and maintain excellence through continuous quality improvement.
MissionTo achieve the highest quality for newborn screening systems by providing relevant, accurate tools and resources and to facilitate collaboration between state programs and other newborn screening partners.
NewSTEPs is funded through a five-year cooperative agreement to APHL by the Genetic Services Branch of the Health Resources and Services Administration (HRSA). APHL is collaborating with the Colorado School of Public Health to implement NewSTEPs
In Collaboration with
Overview of NewSTEPs
In Collaboration with
NewSTEPs
• Comprehensive Newborn Screening Resource and Technical Assistance Resource for the U.S.
• Publically available website: www.NewSTEPs.org
• Data repository with varying levels of access for the public, state newborn screening programs, and public health decision makers
In Collaboration with
Partnerships and Collaboration
• NewSTEPs Steering Committee• Routine interaction with Regional
Collaboratives• Continual outreach to NBS programs• All work groups comprise individuals from the
NBS Community
In Collaboration with
NewSTEPs
Partnerships & Outreach
Site Visits
Quality Indicators
Case Definitions
Website & Data
Repository
Disease Specific
Activities
Continuous Quality
Improvement
In Collaboration with
Development of Voluntary Data Repository
• Vendor chosen: 5AM Solutions, Inc.• Purpose: Provide tools to state newborn
screening systems to adequately evaluate, analyze, and benchmark the performance of their tests and the quality of their newborn screening programs
In Collaboration with
Components of the Data Repository
• State Newborn Screening Program Profiles• Baby level data on infants diagnosed with a
disorder through newborn screening– Case Definitions Project with HRSA
• Quality Indicators of Newborn Screening Programs – laboratory and follow-up
In Collaboration with
State Newborn Screening Profiles
• Program structure• Disorders screened, with dates of initiation• Steps to add new conditions• Fees• Personnel structure, contact information• Hours, emergency procedures• Partnerships with birth defects, other partners
In Collaboration with
Baby Level Data
• Disorder specific newborn screening data– Timing of diagnosis, follow-up– Diagnostic factors on key follow-up elements
• Case Definitions – 29 case dried blood spot NBS conditions being
finalized and undergoing pilot testing– CCHD case definitions will be incorporated
In Collaboration with
Quality Indicators
• A set of 8 quality indicators have been developed in cooperation with newborn screening program experts
• The intent of these indicators is to provide tools to states to identify areas of strength or improvement while providing a snapshot of national trends
• QIs 1 and 2 focus on collection and information gathering for dried blood spots
• QIs 3 – 8 are intended for all NBS conditions
In Collaboration with
Quality Indicators
QI 1. Percent of invalid dried blood spot specimens due to improper collection and/or transport
QI 2. Percent of dried blood spot specimens missing essential information
QI 3. Percent of eligible infants not receiving valid newborn screening test, stratified by dried blood spot or point of care test(s).
QI 4. Percent of loss to follow-up
QI 5. Time elapsed from birth to screening, follow-up testing, confirmed diagnosis
QI6. Percent of out of range results
QI7. Frequency of condition detected by newborn screening for each disorder
QI8. Percent of missed cases (false negatives), stratified by disorder
In Collaboration with
Continuous Quality Improvement (CQI) Program
• Components of national and state CQI programs:– Quality Indicators– Annual Mini Reviews– Full Site Visits– Continuing Education– Development of Quality Improvement Program
In Collaboration with
Disease Specific Outreach
• Critical Congenital Heart Disease (CCHD)– Monthly Technical Assistance (TA) calls– Working with other groups to develop resources
• Cystic Fibrosis Foundation – Discussions about connecting NewSTEPs
repository with CFF long term registry
In Collaboration with
Evaluation Site Visits
• Pre-Evaluation Tool followed by• Evaluation Site Visit (subject matter experts
comprise 5-6 person Site Visit Team)• Follow-Up with a comprehensive report and
recommendations• Work closely with all components of newborn
screening program to perform evaluation.
In Collaboration with
Evaluation Site Visits
• Comprehensive visit with a team of experts that evaluates an entire newborn screening program including laboratory system, birthing facilities, and follow-up system
• Customizable for programs• Non-regulatory• Technical assistance continues following the
visit.
In Collaboration with
Summary - NewSTEPs
• NewSTEPs is partnering with newborn screening programs to:– Provide technical assistance and resources– Collate and summarize data in aggregate form – Develop opportunities for quality improvement,
locally, regionally, and nationally
In Collaboration with
Contact us
• Marci Sontag, PhD– [email protected]– (303) 724-4430
• Sikha Singh, MHS, PMP– [email protected] – (240) 485-2726
In Collaboration with
Partners in Newborn Screening
Birth
Newborn Screening
Diagnosis
Long Term Follow-up
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