Advisory Committee on Heritable Disorders
in Newborns and Children

Upcoming Meeting
November 7-8, 2019

Click here to download the final agenda.

TIME TOPIC PRESENTER
10:00AM – 10:15AM
  • Welcome
  • Roll Call
  • Opening Remarks
  • April 2019 Minutes

 

Cynthia Powell, MD, MS, FACMG, FAAP
Committee Chair

Catharine Riley, PhD, MPH
Designated Federal Official
Health Resources and Services Administration (HRSA)

10:15AM – 10:45AM Improving Detection of Newborns at Risk for Homocystinuria and Congenital Adrenal Hyperplasia Carla Cuthbert, PhD
Ex-officio Member
Centers for Disease Control and Prevention (CDC)
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

 

MODERATOR:

Cynthia Powell,  MD, MS, FACMG, FAAP
Committee Chair

Panel Presenters – Evidence-based Review Group Members:

Alex R. Kemper, MD, MPH, MS
Lisa A. Prosser, PhD, MS
Jelili Ojodu, MPH
Scott Grosse, PhD

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 PRESENTER
9:30AM  –  9:45AM
  • Welcome
  • Roll Call

 

Cynthia Powell,  MD, MS, FACMG, FAAP
Committee Chair

Catharine Riley, PhD, MPH
Designated Federal Official, HRSA

9:45AM – 10:15AM International Rare Disease Research Consortium (IRDiRC)  Anne R. Pariser, MD
Director, Office of Rare Diseases Research
National Center for Advancing Translational Sciences, National Institutes of Health

 

10:15AM – 11:00AM Implementation of RUSP Conditions Report Alex R. Kemper, MD, MPH, MS
Lead, Evidence-based Reviews
11:00AM – 11:30AM Linking Data Resources: Interoperability for Newborn Screening Programs Ashleigh Ragsdale, MPH
Newborn Screening Epidemiologist
Office of Newborn Screening
Washington State Department of Health
11:30AM– 12:30PM Lunch
12:30PM – 1:00PM Public Comment
1:00PM – 1:10PM Ad-Hoc Workgroup – Interpreting NBS results Mei Baker, MD
Committee Member
1:10PM – 1:20PM Follow Up and Treatment Workgroup Update Christopher Kus, MD, MPH
Co-Chair, Follow up & Treatment Workgroup
1:20PM – 1:30PM Education and Training Workgroup Update Beth Tarini, MD
Chair, Education & Training Workgroup
1:30PM – 1:40PM Laboratory Standards and Procedures Workgroup Update Kellie Kelm, PhD
Chair, Laboratory Standards and Procedures Workgroup
1:40PM – 1:55PM Discussion: Workgroup Ideas Cynthia Powell, MD
Committee Chair
1:55PM – 2:00PM New Business Cynthia Powell, MD
Committee Chair
2:00PM Adjourn