Agenda (PDF - 212 KB)
Meeting Minutes (PDF - 171 KB)
Webcast
Transcripts
- January 29, 2024 (PDF - 672 KB)
- January 30, 2024 (PDF - 429 KB)
Presentations
Day 1
Family Outcomes of Newborn Screening: Project Overview Update (PDF - 1 MB)
Don Bailey, Jr., Ph.D., Med RTI International
Panel: Research on Family Perspectives:
Families’ Search for Meaning and Value in Rare Genetic Diagnoses (PDF - 1 MB)
Sara Ackerman, Ph.D., M.Ed.
University of California, San FranciscoThe “Value of Values”: Expanding Assessment of Net Benefits and Harms through Social Science Data (PDF - 1 MB)
Aaron Goldenberg, Ph.D., M.A., M.P.H.
Case Western Reserve University School of MedicineDuchenne Muscular Dystrophy Evidence-Based Review: Phase 2 Update (PDF - 215 KB)
Alex R. Kemper, M.D., M.P.H., M.S.
Lead Evidence-Based Review GroupACHDNC Decision Matrix Tool: Public Health Assessment (PDF - 163 KB)
Ned Calonge, M.D., M.P.H.
Committee ChairACHDNC Nomination Process Update (PDF - 298 KB)
Ned Calonge, M.D., M.P.H.
Committee ChairACHDNC Nomination and Evidence-Based Review Process Proposal (PDF - 226 KB)
Ned Calonge, M.D., M.P.H.
Committee Chair
Day 2
Newborn Screening for Krabbe Disease Expedited Evidence-Based Review (PDF - 978 KB)
Alex R. Kemper, M.D., M.P.H., M.S.
Lead, Evidence-Based Review GroupLisa A. Prosser, Ph.D.
Member, Evidence-Based Review GroupCommittee Report: Newborn Screening for Krabbe Disease (PDF - 948 KB)
Shawn E. McCandless, M.D.
Committee MemberJennifer M. Kwon, M.D., M.P.H., FAAN
Committee Member*Note: While the presenters did not recommend Krabbe disease for inclusion to the RUSP, the Committee ultimately voted to recommend to the Secretary to add Krabbe disease for inclusion to the RUSP. (2/5/2024)