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Advisory Committee on Heritable Disorders in Newborns and Children

November 2-3, 2023 | Virtual Meeting

Agenda

Download a copy of the agenda.

Agenda: Thursday, November 2, 2023, from 10:00 AM – 3:45 PM Eastern Time

TIME TOPIC
10:00 AM – 10:15 AM
  • Welcome
  • Roll Call
  • Opening Remarks
  • Committee Business
10:15 AM – 10:30 AM  NASEM Workshop Update:  Next Generation Screening – The Promise and Perils of DNA Sequencing of Newborns at Birth
10:30 AM – 10:50 AM Committee Discussion
10:50 AM – 11:35 AM Public Comments
11:35 AM – 11:45 AM Break
11:45 AM – 12:00 PM ACHDNC Decision Matrix
12:00 PM – 12:20 PM

Committee Discussion

  • Vote on whether or not to adopt ACHDNC Decision Matrix revisions
12:20 PM – 1:00 PM Lunch
1:00 PM – 1:15 PM ACHDNC Conflict of Interest
1:15 PM – 1:35 PM  Committee Discussion
1:35 PM – 1:45 PM Introduction to Listening Session: Nomination Process and Criteria to Consider for the RUSP
1:45 PM – 2:15 PM Break
2:15 – 3:45 PM

Listening Session: Nomination Process and Criteria to Consider for the RUSP

  •  Family and Representative Organization Group
  •  Laboratory Group
  •  Clinician Group
  •  Public Health Group
3:45 PM End of Day 1

Agenda: Friday, November 3, 2023, from 9:30 AM – 12:50 PM Eastern Time

TIME TOPIC
9:30 AM – 9:45 AM
  • Welcome
  • Roll Call
  • Committee Business
9:45 AM – 10:45 AM

 

Listening Session Group Updates

  • Public and Organizations
  • Laboratory
  • Clinician
  • Public Health
10:45 AM – 11:15 AM Committee Discussion
11:15 AM – 11:30 AM Break
11:30 AM – 11:45 AM Duchenne Muscular Dystrophy Evidence-Based Review: Phase 1 Update
11:45 AM – 12:00 PM Committee Discussion
12:00 PM – 12:15 PM Krabbe Disease Expedited Evidence-Based Review: Phase 1 Update
12:15 PM – 12:30 PM Committee Discussion
12:30 PM – 12:45 PM New Business
12:45 PM – 12:50 PM Adjourn
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