Nutrition Guideline Project

Synopsis of the Process used for Guideline Development:

GMDI is collaborating with the Southeast Regional Newborn Screening and Genetics Collaborative (SERC) on this effort. Rani H. Singh, PhD, RD is the Principal Investigator. Please contact Fran Rohr ( fran.rohr@acordex.com) if you would like to participate.

GMDI is collaborating with the Southeast Region Genetics Collaborative in an HRSA-funded project to develop nutrition guidelines using a formal evidence-based process. Under the direction of PI Rani Singh and Co-PI Fran Rohr, an extensive evidence-based process is now in place.

Five topical work groups have been organized with each team consisting of seven to eight members. The work groups, work group chair(s), GMDI workgroup members and the first disorder(s) that each team is focusing on, is listed below. Pat Splett, a consultant familiar with the evidence analysis process is helping the teams throughout the process.

Nutrition Guidelines Core Group

Principal Investigator (PI): Rani Singh

Co-PI: Fran Rohr

Evidence Analysis Consultant: Pat Splett

PKU Workgroup:

Chairs Amy Cunningham and Shideh Mofidi

  • Kristen Farnham
  • Debra Hook
  • Laura Jeffers
  • Helen McCune
  • Kathryn Moseley
  • Surekha Pendyal
  • Jill Skrabal
  • Ann Wessel

Amino Acidopathies Workgroup: Chair Diane Frazier

  • Courtney Allgeier
  • Anne Boney
  • Caroline Homer
  • Barbara Marriage
  • Beth Ogata
  • Diana Pantalos
  • Cristine Trahms

First guideline for development: MSUD

Fatty Acid Disorders Workgroup: Chairs Fran Rohr and Sandy van Calcar

  • Silvia Del Cerro
  • Laura Duncan
  • Nicole Payne
  • Lee Shelly Wallace
  • Tarine Weihe

First guidelines for development: MCAD and VLCAD

Organic Acidemias Workgroup: Chair Keiko Ueda; Co-Chair Elaina Jurecki

  • Nancy Baugh
  • Laurie Bernstein
  • Lisa Bingen
  • Christie Hussa
  • Ann Marie Roberts
  • Heather Saavedra
  • Steven Yannicelli

First guideline for development: Propionic acidemia

Work groups are currently drafting specific questions that will be used to complete extensive literature searches for all of the above topics. Work groups are also collecting “Gray Literature.” Gray literature is information used by clinicians that is not found in peer-reviewed publications. This can include education materials, clinic protocols, abstracts and conference proceedings. This information will be important since nutrition protocols are often not published and based on trial and error in clinical practice. Using the ADA evidence-based library model, all the collected relevant literature will be submitted to a web based portal managed by project staff at Emory University.

A panel of experts (RDs and MDs) in the field will be surveyed independently using the Delphi Method (Round I) to grade the collected literature based on its strength and validity to answer the research questions for each disorder. Another expert group (Nominal panel) will then meet to review the survey findings and produce draft guidelines. The draft guidelines will be released for a second grading by the expert panel (Delphi Round II) before the final phase of internal and external reviews and field-testing of the nutrition guidelines.

On Oct 2, workgroup chairs and one member from each of the committees met in Atlanta and reviewed progress, discussed strategies and received further training in the guideline development process.

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