August 30-31, 2022

Agenda (PDF - 370 KB)

Meeting Minutes (PDF - 589 KB) 

Webcast

• August 30, 2022 
• August 31, 2022

Transcripts

• August 30, 2022 (PDF - 806 KB) 
• August 31, 2022 (PDF - 878 KB) 

Presentations

Day 1

Incoming Chair Remarks (PDF - 173 KB)

Ned Calonge, M.D., M.P.H.
Committee Chair

Panel: Infant Formula Shortage

Susan A. Berry, M.D. (PDF - 1 MB)
Professor, Division of Genetics and Metabolism
Department of Pediatrics University of Minnesota

Sandy van Calcar, Ph.D., R.D., L.D. (PDF - 405 KB)
Associate Professor
Department of Molecular and Medical Genetics Graduate Programs in Human Nutrition
Oregon Health and Science University

Sarah Chamberlin (PDF - 639 KB)
Executive Director National PKU News

Panel: Strengthening Newborn Screening System

Ned Calonge, M.D., M.P.H. (PDF - 123 KB)
Committee Chair

Erica Wright, M.S., C.G.C. (PDF - 978 KB)
Senior Instructor, Certified Genetic Counselor
Clinical Genetics and Metabolism
Department of Pediatrics
University of Colorado School of Medicine
Children’s Hospital Colorado

Scott M. Shone, Ph.D., H.C.L.D. (A.B.B.) (PDF - 3 MB)
Director
North Carolina State Laboratory of Public Health

Day 2

Education and Training Workgroup Update (PDF - 177 KB)

Jane M. DeLuca, Ph.D., R.N., C.P.N.P.
Committee Member
Chair, Education and Training Workgroup

Follow-up and Treatment Workgroup Update (PDF - 179 KB)

Kyle Brothers, M.D., Ph.D.
Committee Member
Chair, Follow-up and Treatment Workgroup

Laboratory Standards and Procedures Workgroup Update (PDF - 176 KB)

Kellie B. Kelm, Ph.D.
Ex-Officio Committee Member
Chair, Laboratory Standards and Procedures Workgroup

Krabbe Disease Evidence-Based Review – Phase 1 Update (PDF - 258 KB)

Alex R. Kemper, M.D., M.P.H., M.S.
Lead, Evidence-Based Review Group

Updates on Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions Program: New York (PDF - 1 MB)

Michele Caggana, Sc.D., F.A.C.M.G.
Director, Newborn Screening Program
Wadsworth Center
New York State Department of Health

Kathy Chou, Ph.D.
Supervisor, External Systems Quality Unit
Newborn Screening Program
Wadsworth Center
New York State Department of Health

Updates on Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions Program: Connecticut (PDF - 1 MB)

Debra Ellis, R.N., B.S.N.
Program Coordinator
Connecticut Newborn Screening
Network Connecticut Children’s

Katherine Raboin, M.S.N., R.N.
Program Coordinator/Senior Analyst
Connecticut Newborn Screening Network Connecticut Children’s