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.
| TIME | TOPIC |
| 10:00AM – 10:15AM |
|
| 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.
| TIME | TOPIC |
| 9:30AM – 9:45AM |
|
| 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 |