Advisory Committee on Heritable Disorders
in Newborns and Children
Upcoming Meeting
August 1-2, 2019
Click here to download the final agenda for the April meeting.
| TIME | TOPIC | PRESENTER |
| 10:00AM – 10:15AM |
|
Joseph Bocchini, MD Committee Chair Catharine Riley, PhD, MPH Designated Federal Official Health Resources and Services Administration (HRSA) |
| 10:15AM – 11:00AM | New Disorders Readiness Tool | Yvonne Kellar-Guenther, PhD Senior Research Scientist Center for Public Health Innovation |
| 11:00AM – 11:15AM | Public Comment | |
| 11:15AM – 11:30AM | RUSP Condition Nomination and Evidence Review Process: Draft Approach and Timeline | Joseph Bocchini, MD Committee Chair |
| 11:30AM –12:30PM | Lunch | |
| 12:30PM – 2:15PM | Evidence Review Process | Cynthia Powell, MD, MS, FACMG, FAAP Incoming Committee Chair Alex R. Kemper, MD, MPH, MS Lead, Evidence-based Reviews |
| 2:15PM – 3:15PM | Acknowledgements for Dr. Bocchini | |
| 3:15PM | Adjourn* | |
*Workgroups meet on Tuesday, April 23, 2019 from 3:30pm –5:00pm at 5600 Fishers Lane, Rockville, MD.
| TIME | TOPIC | PRESENTER |
| 9:30AM – 9:45AM |
|
Joseph Bocchini, MD Committee Chair Catharine Riley, PhD, MPH Designated Federal Official, HRSA |
| 9:45AM – 10:15AM | Newborn Screening Pilot Studies | Michael S. Watson, PhD, FACMG Executive Director, American College of Medical Genetics and Genomics |
| 10:15AM – 10:30AM | Ad-Hoc Workgroup – Interpreting NBS Results | Mei Baker, MD Committee Member |
| 10:30AM – 11:00AM | Cystic Fibrosis Registry | Bruce Marshall, MD Senior Vice President of Clinical Affairs Cystic Fibrosis Foundation |
| 11:00AM – 11:30AM | Primary Immune Deficiency Treatment Consortium (PIDTC): Severe Combined Immunodeficiencies (SCID) Data Collection | Jennifer Puck, MD Principal Investigator, PIDTC UCSF Department of Pediatrics Allergy, Immunology, and Blood and Marrow Transplantation Division |
| 11:30AM– 12:15PM | Lunch | |
| 12:15PM – 12:30PM | Public Comment | |
| 12:30PM – 12:45PM | Follow Up and Treatment Workgroup Update | Christopher Kus, MD, MPH Co-Chair, Follow Up and Treatment Workgroup |
| 12:45PM – 1:00PM | Education and Training Workgroup Update | Beth Tarini, MD Chair, Education and Training Workgroup |
| 1:00PM – 1:15PM | Laboratory Standards and Procedures Workgroup Update | Kellie Kelm, PhD Chair, Laboratory Standards and Procedures Workgroup |
| 1:15PM – 1:30PM | RUSP Condition Nomination and Evidence Review Process: Follow up Discussion | Joseph Bocchini, MD Committee Chair |
| 1:30PM – 1:55PM | On the Horizon | Cynthia Powell, MD Incoming Committee Chair |
| 1:55PM – 2:00PM |
|
Joseph Bocchini, MD Outgoing Committee ChairCynthia Powell, MD Incoming Committee Chair |
| 2:00PM | Adjourn | |