Management
Guidelines
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PROP Nutrition Management Guidelines
First Edition
March 2017, v.1.2
Updated: September 2017
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Contributors
Key Project Personnel

Nutrition Guidelines Project Principal Investigators: 

  • Rani H. Singh, PhD, RD
    Emory University, Dept. of Human Genetics

  • Fran Rohr, MS, RD
    Boston Children's Hospital

Nutrition Guidelines Project Workgroup Chairs:

  • Amino Acidopathies: Dianne Frazier, PhD, RD
  • PKU: Amy Cunningham, MS, RD and Shideh Mofidi, MS, RD
  • Organic Acidopathies: Keiko Ueda, MPH, RD and Elaina Jurecki, MS, RD
  • Fatty Acid Oxidation Disorders: Sandy Van Calcar, PhD, RD and Mary Sowa, MS, RD

PROP Workgroup Members:

  • Elaina Jurecki, MS, RD (Co-Chair)
    Senior Director, Global Medical Affairs, BioMarin Pharmaceutical, Inc.
  • Keiko Ueda, MPH, RD, LDN (Co-Chair)
    Clinical Dietitian Specialist; British Columbia Children’s Hospital
  • Dianne Frazier, PhD, RD (Project Consultant)

Professor Emeritus, University of NorthCarolina, Chapel Hill

  • Christie Hussa, RD, LDN
    Patient Care Coordinator, BioMarin Pharmaceutical, Inc.

  • Julie McClure, MPH, RD
    Instructor; University of North Carolina

  • Laura Nagy, MSc, RD
    Clinical Dietitian; Sick Kids
  • Lisa Obernolte, MS, RD
    Registered Dietitian; University of Wisconsin–Madison

  • Matt Rasberry, MS, RD, CNSC
    Clinical Dietitian; University of Wisconsin–Madison

  • Bridget Reineking, MS, RD, CD
    Clinical Dietitian Specialist; Biomarin

  • Ann-Marie Roberts, RD, CSP
    Registered Dietitian; Children's Hospital Central California
  • Amie Thompson, RD, LD
    Metabolic Dietitian; Greenwood Genetics Center

  • Steven Yannicelli, PhD, RD
    Vice President Medical and Scientific Affairs; Nutricia North America

Delphi I Participants

  • 9 Dietitians and 2 Physicians participated in the first PROP Delphi survey.

Nominal Group Experts:

  • Jose Abdenur, MD; Children's Hospital of California
  • Jill Chertow Frank; Propionic Acidemia Foundation
  • Kathy Stagni; Organic Acidemia Group
  • Mark Korson, MD; Genetic Metabolic Center for Education
  • Sandy van Calcar, PhD, RD, LD; Oregon Health and Science University
  • Lauri Bernstein, RD; Colorado Children's Hospital
  • Suzanne Ratko, RD; London Health Sciences Center, London, Ontario, Canada
  • Nancy Baugh, MS, RD; Lucile Packard Children's Hospital at Stanford
  • Oleg Shchelochkov, MD;  NIH
  • Irini Manoli, MD, PhD; NIH

Delphi II Participants

  • 12 Dietitians and 14 Physicians participated in the second PROP Delphi survey.

External Review Participants

  • 10 individuals have been invited to participate in the external review of the PROP Management Guidelines. They included relevant stakeholders such as dietitians and physicians who will provide an assessment of the Guidelines for Nutrition Management of individuals with PROP.

Experts included at different steps included clinicians (geneticists, primary care physicians, and dietitians), researchers, and consumers (parents of children with PROP, adult patients).

Nutrition Guidelines Project Staff

  • Project Consultant:  Patricia Splett, PhD, RD;  Splett & Associates and University of Minnesota;
  • Application Developer:  Adrya Stembridge; Emory University, Dept. of Human Genetics
  • Project Manager: Yetsa Osara, MPH; Emory University, Dept. of Human Genetics
  • Lead Evidence Analysts:  Katie Coakley, MS, RD, LD and Alana Aisthorpe; Emory University, Dept. of Human Genetics
  • Reference Librarian:  Barbara Abu-Zeid; Emory University, Health Sciences Center Library

Nutrition Guidelines Project Core Group

  • Principal Investigators
  • Project Manager
  • Application Developer
  • Workgroup Chairs
  • GMDI President
  • Project Consultant

All project personnel and workgroup members submitted a conflict of interest statement approved by Emory University’s Institutional Review Board.

Potential Conflict of Interest Disclosure

  • Elaina Jurecki,MS RD - is an employee and stock owner for BioMarin Pharmaceutical Inc.
  • Fran Rohr, MS, RD - has served as a consultant for Cambrooke Therapeutics, Vitaflo and Nutricia North America.
  • Patricia Splett, PhD, RD - has no financial or other conflict of interest disclosures.
  • Keiko Ueda, MPH RD - has no financial or other conflict of interest disclosures
  • Steven Yannicelli, PhD, RD - is Vice President, Medical and Scientific Affairs, Nutricia North America.
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