Advisory Committee on Heritable Disorders in Newborns and Children

August 8-9, 2024 | In-Person with Virtual Option

Agenda

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Agenda: Thursday, August 8, 2024, from 10:00 AM – 3:00 PM Eastern Time

TIME	TOPIC
10:00 AM – 10:15 AM	Welcome Roll Call Opening Remarks Committee Business
10:15 AM – 10:30 AM	ACHDNC Nomination and Evidence Review Process
10:30 AM – 10:45 AM	Committee Discussion
10:45 AM – 11:05 AM	ACHDNC Decision Matrix Tool: Public Health System Assessment
11:05 AM – 11:35 PM	Committee Discussion Vote on whether or not to adopt the Decision Matrix as a tool to evaluate evidence presented to it and in making recommendations regarding addition of the condition to the RUSP.
11:35 AM – 11:45 AM	Break
11:45 AM – 12:00 PM	Standardized Reporting of Newborn Screening Outcomes (STAR-NBS)
12:00 PM – 12:15 PM	Committee Discussion
12:15 PM – 12:25 PM	Including Voices that Matter: Summary of the Review of Research Focusing on Lived Experience Perspectives
12:25 PM – 12:45 PM	Committee Discussion
12:45 PM – 1:45 PM	Lunch
1:45 PM – 2:25 PM	Approaches to Population-Based Screening in Newborns and Children
2:25 PM – 2:55 PM	Committee Discussion
2:55 PM – 3:00 PM	End Day 1

Agenda: Friday, August 9, 2024, from 10:00 AM – 1:05 PM Eastern Time

TIME	TOPIC
10:00 AM – 10:15 AM	Welcome Roll Call Opening Remarks Committee Business
10:15 AM – 11:15 AM	Public Comments
11:15 AM – 11:30 AM	Metachromatic Leukodystrophy (MLD) Nomination Process
11:30 AM – 11:45 AM	Committee Discussion Vote on whether or not to move MLD forward to full evidence review.
11:45 AM – 12:00 PM	Break
12:00 PM – 12:20 PM	Naming/Counting Condition ACHDNC Ad Hoc Topic Groups: Updates and Next Steps
12:20 PM – 12:50 PM	Committee Discussion
12:50 PM – 1:00 PM	New Business
1:00 PM – 1:05 PM	Adjourn