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Advisory Committee on Heritable Disorders in Newborns and Children

January 29-30, 2024 | In-Person with Virtual Option

Agenda

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Agenda: Monday, January 29, 2024, from 10:00 AM – 4:30 PM Eastern Time

TIME TOPIC
10:00 AM – 10:15 AM
  • Welcome
  • Roll Call
  • Committee Business
10:15 AM – 10:35 AM Family Outcomes of Newborn Screening:  Project Overview Update
10:35 AM – 10:55 AM Committee Discussion
10:55 AM – 11:40 AM Research on Family Perspectives
11:40 AM – 12:15 PM Committee Discussion
12:15 PM – 1:00 PM Lunch
1:00 PM – 1:30 PM Public Comments
1:30 PM – 1:45 PM Duchenne Muscular Dystrophy Evidence-Based Review: Phase 2 Update
1:45 PM – 2:00 PM Committee Discussion
2:00 PM – 2:15 PM ACHDNC Decision Matrix Tool:  Public Health Assessment
2:15 PM – 2:35 PM Committee Discussion
2:35 PM – 2:45 PM Break
2:45 PM – 3:00 PM ACHDNC Nomination Process Update  
3:00 PM – 3:10 PM ACHDNC Nomination and Evidence-Based Review Process Proposal
3:10 PM – 4:30 PM Committee Discussion
4:30 PM End Day 1

 

Agenda: Tuesday, January 30, 2024, from 10:00 AM – 2:50 PM Eastern Time

TIME TOPIC
10:00 AM – 10:30 AM
  • Welcome
  • Roll Call
  • Committee Business
10:30 AM – 11:15 AM Public Comments
11:15 AM – 11:25 AM Break
11:25 AM – 12:00 PM Newborn Screening for Krabbe Disease: An Expedited Evidence-Based Review
12:00 PM – 12:30 PM Committee Discussion
12:30 PM – 1:15 PM Lunch
1:15 PM – 1:35 PM Committee Report:  Newborn Screening for Krabbe Disease
1:35 PM – 2:00 PM Committee Discussion

  • ·Vote on whether or not to recommend Krabbe Disease for inclusion on the Recommended Uniform Screening Panel
2:00 PM – 2:10 PM Break
2:10 PM – 2:20 PM NewSTEPs Ad Hoc Newborn
Screening Workgroups: Update
2:20 PM – 2:30 PM Committee Discussion
2:30 PM – 2:40 PM New Business
2:40 PM – 2:45 PM Adjourn