- Agenda (PDF - 138 KB)
- Meeting Minutes (PDF - 393 KB)
Transcripts
- August 1, 2019 (PDF - 526 KB)
- August 2, 2019 (PDF - 478 KB)
Presentations
August 1, 2019
Opening Remarks and Committee Correspondence (PDF - 1 MB)
Cynthia Powell, MD
Committee Chair
Improving Detection of Newborns at Risk for Homocystinuria and Congenital Adrenal Hyperplasia (PDF - 795 KB)
Carla Cuthbert, PhD
Ex-Officio Committee Member - Centers for Disease Control and Prevention
RUSP Condition Nomination and Evidence Review Process - Approach and Timeline (PDF - 109 KB)
Cynthia Powell, MD
Committee Chair
RUSP Condition Nomination and Evidence Review Process - Analysis of Committee Procedures: Decision Modeling, PHSI, and Cost Assessments (PDF - 691 KB)
Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews
Members, Evidence-based Review Group
Lisa A. Prosser, PhD, MS
Jelili Ojodu, MPH
Scott Grosse, PhD
RUSP Condition Nomination and Evidence Review Process - Stakeholder Values in Decision-Making (PDF - 365 KB)
Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews
August 2, 2019
International Rare Disease Research Consortium (PDF - 1 MB)
Anne R. Pariser, MD
Director, Office of Rare Diseases Research
Implementation of RUSP Conditions Report (PDF - 1 MB)
Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews
Linking Data Resources: Interoperability for Newborn Screening Programs (PDF - 2 MB)
Ashleigh Ragsdale, MPH
Newborn Screening Epidemiologist
Ad-Hoc Workgroup – Interpreting NBS Results (PDF - 45 KB)
Mei Baker, MD
Committee Member
Follow Up and Treatment Workgroup Update (PDF - 119 KB)
Christopher Kus, MD, MPH
Co-Chair, Follow up & Treatment Workgroup
Education and Training Workgroup Update (PDF - 217 KB)
Beth Tarini, MD
Committee Member
Chair, Education & Training Workgroup
Laboratory Standards and Procedure Workgroup Update (PDF - 492 KB)
Kellie Kelm, PhD
Ex-Officio Committee Member - Food and Drug Administration
Chair, Laboratory Standards and Procedures Workgroup
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