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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