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August 1-2, 2019 Meeting

Agenda (PDF - 139 KB)
Meeting Minutes - (PDF 394 KB) 
Webcast - Pending
Transcript Day 1 (PDF - 527 KB) & Day 2 (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 Member
 
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 - 692 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 - 366 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 - 1.57 MB)
Alex R. Kemper, MD, MPH, MS
Lead, Evidence-Based Reviews

Linking Data Resources: Interoperability for Newborn Screening Programs (PDF - 2.3 MB)
Ashleigh Ragsdale, MPH
Newborn Screening Epidemiologist

Ad-Hoc Workgroup – Interpreting NBS Results (PDF - 46 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 - 218 KB)
Beth Tarini, MD
Chair, Education & Training Workgroup

Laboratory Standards and Procedure Workgroup Update (PDF - 493 KB)
Kellie Kelm, PhD
Chair, Laboratory Standards and Procedures Workgroup

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Date Last Reviewed:  October 2019