Advisory Committee on Heritable Disorders
in Newborns and Children

Upcoming Meeting
August 1-2, 2019

Below is the draft agenda for the meeting. The final agenda will be posted no later than 48 hours prior to the meeting.

10:00AM – 10:15AM
  • Welcome
  • Roll Call
  • Opening Remarks
  • April 2019 Minutes
10:15AM – 10:45AM Improving Detection of Newborns at Risk for Homocystinuria and Congenital Adrenal Hyperplasia
10:45AM – 11:30AM Public Comment –  Condition Nomination and Evidence Review Process
11:30AM –12:30PM Lunch
12:30PM –2:00PM RUSP Condition Nomination and Evidence Review Process
2:00PM – 2:15PM Break
2:15PM – 3:15PM RUSP Condition Nomination and Evidence Review Process  (continued)
3:15PM Adjourn* 

*Workgroups meet on Thursday, August 1, 2019 from 3:30pm –5:00pm at 5600 Fishers Lane, Rockville, MD.

9:30AM  –  9:45AM
  • Welcome
  • Roll Call
9:45AM – 10:15AM International Rare Disease Research Consortium (IRDiRC)
10:15AM – 11:00AM Implementation of RUSP Conditions Report
11:00AM – 11:30AM Linking Data Resources
11:30AM– 12:30PM Lunch
12:30PM – 1:00PM Public Comment
1:00PM – 1:10PM Ad-Hoc Workgroup – Interpreting NBS results
1:10PM – 1:20PM Follow Up and Treatment Workgroup Update
1:20PM – 1:30PM Education and Training Workgroup Update
1:30PM – 1:40PM Laboratory Standards and Procedures Workgroup Update
1:40PM – 1:55PM Discussion: Workgroup Ideas
1:55PM – 2:00PM New Business
2:00PM Adjourn