Advisory Committee on Heritable Disorders in Newborns and Children

February 9-10, 2023 | Virtual Meeting

Agenda

The meeting is scheduled for Thursday, February 9, 2023, from 9:30 AM to 3:00 PM Eastern Time (ET) and Friday, February 10, 2023 from 9:30 AM to 2:00 PM ET. A final agenda will be posted at least 48 hours prior to the meeting.

Agenda: Thursday, February 9, 2023, from 9:30 AM – 3:15 PM Eastern Time

TIME	TOPIC
9:30 AM – 9:45 AM	Welcome
9:45 AM – 10:30 AM	Public Comment
10:30 AM – 11:30 AM	Newborn Screening for Krabbe Disease: A Systematic Review of the Evidence (Part 1)
11:30 AM – 11:45 AM	Break
11:45 AM – 12:45 PM	Newborn Screening for Krabbe Disease: A systematic Review of the Evidence and Review of Public Health Assessment Survey Results (Part 2)
12:45 PM – 1:30 PM	Lunch
1:30 PM – 2:15 PM	Committee Report: Newborn Screening for Krabbe Disease
2:15 PM – 3:10 PM	Committee Discussion *Vote on whether or not to recommend Krabbe Disease for inclusion on the Recommended Uniform Screening Panel*
3:10 PM – 3:15 PM	Orientation to Workgroup Sessions
3:15 PM	End of Day 1

Agenda: Friday, February 10, 2023 from 9:30 AM – 2:00 PM Eastern Time

TIME	TOPIC
9:30 AM – 9:45 AM	Welcome
9:45 AM –10:15 AM	Prioritization and Capacity Workgroup Interim Update
10:15 AM – 10:45 AM	Public Comment
10:45 AM – 10:55 AM	Education and Training Workgroup Report
10:55 AM – 11:05 AM	Follow-up and Treatment Workgroup Report
11:05 AM – 11:15 AM	Laboratory Standards and Procedures Workgroup Report
11:15 AM – 11:35 AM	Committee Discussion on Action Items
11:35 AM – 12:00 PM	Lunch Break
12:00 PM – 12:45 PM	Duchenne Muscular Dystrophy (DMD) Nomination Summary
12:45 PM – 1:15 PM	Committee Discussion Vote on whether or not to move DMD forward to full evidence review
1:15 PM – 1:45 PM	HRSA State Interoperability Program
1:45 PM – 1:55 PM	Committee Discussion
1:55 PM – 2:00 PM	New Business
2:00 PM	Adjourn