Management
Guidelines
Portal
VLCAD Nutrition Management Guidelines
First Edition
February 2019, v.1.0
Current version: v.1.1
Updated: February 2019
Feedback/Comments
Send us your Feedback & Comments
This version is not current. Click to view the most recent edition (v.1.1, February 2019).
Contributors
Key Project Personnel

Nutrition Management Guidelines Project Principal Investigators: 

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

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

Nutrition Management 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

VLCAD Workgroup Members:

  • Sandy Van Calcar, PhD, RD (Chair)
    Oregon Health and Science University, Portland, OR
  • Mary Sowa, MS, RD (Co-Chair)
    CHOC Childrens Hospital, Orange, CA
  • Debra Geary Hook, MPH, RDN
    Ultragenyx Pharmaceutical Inc., CA
  • Kristen Narlow, MS, RD, LD, CC
    Emory University, GA

  • Amie Thompson, RD, LD
    Greenwood Genetic Center, SC

  • Tyler Setlock, RDN, LN
    Shodair Children's Hospital, MT
  • Lee Shelly Wallace, EdD, RDN, LDN, FADA, FAND
    University of Tennessee, TN

  • Tarine U. Weihe, MS, RD, LD
    Children’s Mercy Kansas  City, MO

  • Surekha Pendyal, MSc, MEd, RD
    Duke University Medical Center, NC

  • Jennifer Beazer, RD, CSP, LD
    St Luke’s Children’s, ID

  • Laura Duncan, MPH, RD, CCM
    Virginia Commonwealth University, VA

  • Lindsay Raub, MS, RD
    University of Florida, FL

Delphi I Participants

  • 10 Dietitians and 7 Physicians participated in the first VLCAD Delphi survey.

Nominal Group Experts:

  • Heather Bausell, RD, LDN; Ann & Robert H. Lurie Children's Hospital of Chicago
  • Curtis R. Coughlin II, MS, MBe, CGC; University of Colorado School of Medicine
  • Melanie Gillingham, PhD, RD; Oregon Health & Science University
  • Suzanne Hollander, MS, RD, CSP; University of California, Los Angeles
  • Kimberley Page, MS, RD, LDN; Cincinnati Children’s Hospital
  • Sharickah Rogers; FOD Family Support Group
  • Ute Spiekerkoetter, MD, PhD; The University Medical Center Freiburg, Germany
  • Jerry Vockley, M.D., Ph.D; Children's Hospital of Pittsburgh
  • Melinda Whetsell, MS, RD, LD; Greenwood Genetic Center

Delphi II Participants

  • 17 Dietitians and 11 Physicians participated in the second VLCAD Delphi survey.

External Review Participants

  • Twenty experts, including metabolic dietitians, physicians and researchers, were nominated as external reviewers of VLCAD Nutrition Management Guidelines. Nine agreed to participate and seven completed the review process which was conducted by online survey. 

Experts involved at different steps of the guidelines developement process included clinicians (metabolic dietitians and physicians and a genetic couselor), researchers, and a consumer (parent of a child with VLCAD who represented FOD (a fatty acid oxidation support group).

  • 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, PMP; Emory University, Dept. of Human Genetics
  • Lead Evidence Analysts:  Katie Coakley, MS, RD, LD and Joyanna Hansen, PhD, RD, LD; Oregon Health & Science University.
  • Reference Librarian:  Barbara Abu-Zeid and Jeremy Kupsco; Emory University, Health Sciences Center Library

Nutrition Management Guidelines Project Core Group

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

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

Potential Conflict of Interest Disclosure

  • Fran Rohr, MS, RD - has served as a consultant for BioMarin, Cambrooke Therapeutics, Vitaflo and Nutricia North America.
  • Sandy Van Calcar, PhD, RD receives stipends for participating in educational events and/or advisory boards sponsored by Nutricia North America, Abbott Nutrition and Biomarin Pharmaceuticals.
  • Rani H. Singh, PhD, RD - has no financial or other conflict of interest disclosures.

  • Mary Sowa, MS, RD - has no financial or other conflict of interest disclosures.

  • Patricia Splett, PhD, RD - has no financial or other conflict of interest disclosures.
© 2006-2015   —   SOUTHEAST REGIONAL GENETICS NETWORK   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #UH7MC30772