August 27-28, 2015 Meeting

Agenda (PDF - 168 KB)

Meeting Minutes (PDF - 353 KB)

Webcasts

• August 27, 2015
• August 28, 2015

Transcripts

• August 27, 2015
• August 28, 2015
   

Day 1

Opening Remarks, ACHDNC Business & Priorities

Joseph Bocchini, MD
Committee Chair; Louisiana State University
and
Debi Sarkar, MPH
Designated Federal Official, Health Resources and Services Administration

NewSTEPs Data Repository: State of Newborn Screening in the United States
Marci Sontag, PhD
Associate Director, NewSTEPs; Associate Professor, Colorado School of Public Health

Newborn Screening for X-Linked Adrenoleukodystrophy: A Systematic Review of Evidence
Alex Kemper, MD, MPH, MS
Condition Review Workgroup; Duke Clinical Research Institute and
Department  of Pediatrics

Committee Report: Newborn Screening for X-Linked Adrenoleukodystrophy (X-ALD)
Don Bailey, PhD, MEd & Fred Lorey, PhD
Committee Members ACHDNC

Day 2

Updates on Implementation of Screening for Severe Combined Immunodeficiency, Critical Congenital Heart Disease, and Pompe Disease
Jelili Ojodu, MPH
Director, Newborn Screening and Genetics, Association of Public Health Laboratories
and
Marci Sontag, PhD
Associate Director, NewSTEPs; Associate Professor, Colorado School of Public Health

Cost Analysis Workgroup Update
Lisa Prosser, PhD, MS and Alex Kemper, MD, MPH, MS
Condition Review Workgroup

Pilot Study Workgroup Update
Jeff Botkin, MD, MPH
Committee Member and Chair of the Pilot Study Workgroup<

Timeliness Workgroup Update
Kellie Kelm, PhD
Ex-Officio Member - Food and Drug Administration

Cathy Wicklund, MS, CGC
Committee Member