1. Integration of Child Health Information Systems (CHIS) Public Health Data Standards Consortium March 2004 Deborah Linzer, MS MCHB/Genetic Services Branch

2. Newborn Screening Task Force Report Vol. 106, Aug. 2000, Suppl. Approved by: AAP Board of Directors AAP Committee on Genetics AAP Committee on Fetus & Newborn Medical Home Initiatives for Children with Special Needs - Project Advisory Committee AAP Task Force on Newborn & Infant Hearing

3. “Each year 4 million U.S. infants are screened to detect conditions that threaten their life and long-term health…” Newborn Screening

4. Current Newborn Screening Environment NBS systems are State based with variation in how they are administered Public Health Departments must ensure NBS benefits the public’s health Use of IT in NBS systems is rapidly expanding

5. Integrated CHIS Coordinated services facilitate entry into a community based system of services Improvement in the health and quality of life

6. Integrated CHIS Coordination between programs Integration of public health & personal health services data Linkage of clinically useful data to improve access to high quality services Continuous quality improvement

7. Integrated CHIS Title V MCH SPRANS Genetic Services Planning Grants to 22 States Implementation Grants to 11 States Joint Program Initiative Grants to 5 States Sourcebook for Planning & Development A Tool for Assessment & Planning Framework for Integrating CHIS National Newborn Screening & Genetics Resource Center

8. State Planning/ Implementation Grants Integration of NBS programs with other points of early identification of children born with heritable & congenital conditions Integration of points of early identification with systems of early intervention

9. Sourcebook & Tool MCHB  PHII/AKC Integration of NBS & Genetic Service Systems with Other Maternal & Child Health Systems: A Sourcebook for Planning & Development A Tool for Assessment & Planning

10. Sourcebook Describes States demonstrating best practices in the integration of newborn blood spot screening programs with other public health programs & their information systems

11. 9 Key Elements Leadership Project Governance Project Management Stakeholder Involvement Organizational & Technical Strategy Technical Support & Coordination Financial Support & Management Policy Support Evaluation

12. Tool To help Program Managers: Characterize a strategic vision Assess organizational readiness Determine where program stands in the project’s life cycle Question data integration needs & strategies

13. Integrated CHIS MCHB  PHII/AKC Three year project to: Define the long-range vision Expand the conceptual vision for transitioning from current practice Build a business & a policy case for integration of NBS with related CHIS

14. All Kids Count Public Health Informatics Institute (AKC/PHII) The Sourcebook & Tool are available at www.phii.org

15. National Newborn Screening & Genetics Resource Center (NNSGRC) Information on MCHB’s initiative to Integrate Newborn Screening Systems is available at: http://genes-r-us.uthscsa.edu

16. Next Steps Newborn Screening Informatics Practice Network (SIP) Evaluation of State of the States New State Grants

17. Program Contact Deborah Linzer, MS Health Resources & Services Administration Maternal & Child Health Bureau Genetic Services Branch 301-443-1080 dlinzer@hrsa.gov http://mchb.hrsa.gov/

18. Newborn Screening Improves & Saves Lives