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Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment

Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives. May 13, 2010 Advisory Committee on Heritable Disorders in Newborns and Children. Goal

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Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment

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  1. Survey on Electronic Data Collection and Newborn Screening System Information Needs Assessment National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives May 13, 2010 Advisory Committee on Heritable Disorders in Newborns and Children

  2. Goal Plan for the future expansion of the National Newborn Screening Information System (NNSIS) Design Drafted and reviewed by team from HRSA, NICHD, NNSGRC, Genetic Alliance, CDC, APHL, ACMG-NCC & NBSTRN-CC, and selected state newborn screening programs (NBS) Participants Current users of NNIS Two from each state and territory Laboratory Short-Term Follow-Up (STFU) Timing Administered April 2010 to May 2010 National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Survey

  3. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Respondents Survey emailed to 102 individuals 2 from each state Responses from 64 individuals (62.7%) 50% provided contact information Majority of respondents work in either screening laboratory or short-term follow-up 3

  4. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Communication of Screening Results Response Rate – 98% 4

  5. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Tools Used to Communicate Screening Results Response Rate – 92% 5

  6. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Communication of Confirmatory Diagnosis Response Rate – 59% 6

  7. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Tools Used to Communicate Confirmatory Diagnosis Response Rate – 59% 7

  8. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Data Entry & Frequency Response Rate – 76% 8

  9. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Website Use Response Rate – 53% 9

  10. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Information Type Utilized Response Rate – 81% 10

  11. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Information Uses for Programs Response Rate – 100% 11

  12. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Information Response Rate – 100% 12

  13. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Program Database Types and Usage Response Rate – 98% 13

  14. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Expansion Response Rate – 42% 14

  15. NBS Program Future Information Needs Response Rate – 50% 15

  16. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NNSIS Case Definition Response Rate – 100% 16

  17. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Demographic Information Confirmation Response Rate – 100% 17

  18. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Long-Term Follow-Up Response Rate – 100% 18

  19. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Screening Confirmation Response Rate – 100% 19

  20. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Second Screen Linkage Response Rate – 60% 20

  21. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives NBS and NBH Data Exchange Response Rate – 78% 21

  22. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Barriers to Information Technology Expansion & Type of Support Needed Response Rate – 78% 22

  23. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Concerns About Information Sharing Response Rate – 100% 23

  24. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Expanded Information Concerns Response Rate – 100% 24

  25. National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives Discussion • Discussion • Survey Feedback • Results Feedback • Use of Survey Results

  26. Acknowledgements HRSA NICHD CDC Regional Collaboratives Genetic Alliance APHL NNSGRC State NBS Programs ACMG/NCC ACMG/NBSTRN-CC National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives 26

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