Management
Guidelines
Portal
About
Nutrition Guidelines Development
Under the sponsorship of HRSA and in collaboration with GMDI, Region 3 of SERN has undertaken a multi-year project to develop evidence and consensus based nutrition management guidelines for inherited metabolic disorders (IMDs). Helmed by the PI Rani Singh, PhD, RD (Southeast NBS and Genetics Collaborative, SERN) and co-PI, Fran Rohr, MS, RD, LDN (Genetic Metabolic Dietitians International, GMDI), four workgroups were created to develop these guidelines. Each workgroup consists of dietitians from all regions of the United States and draws on the expertise of our partner organization, GMDI.
Management Guidelines Portal
The management guidelines project consists of this public-facing portal and a robust application used for production of management guidelines for which there is little published scientific evidence. The project currently focuses on guideline development for nutrition management. Both evidence-based and consensus-based methods are used in the creation of the guidelines. This process incorporates the best evidence, including published literature, "gray" literature (i.e. clinical protocols), and consensus among practitioners who work with metabolic disorders. Our consensus based portion will use both the Delphi Survey technique and the Nominal Group technique.

Nine national experts in metabolic nutrition were first trained in evidence analysis before examining established consensus techniques for product development. Based on their findings, Four workgroups from all seven HRSA regions are each working on one of the following groups and disorders:

  • Amino Acidopathies Workgroup

    Chairs:

    • Dianne Frazier, PhD, MPH, RD

    Disorders:

    • MSUD

  • Amino Acidemia Workgroup

    Chairs:

    • Amy Cunningham, MS, RD, LDN
    • Shideh Mofidi, MS, RD, CSP

    Disorders:

    • PKU

  • Organic Acidopathies Workgroup

    Chairs:

    • Elaina Jurecki, MS, RD
    • Keiko Ueda, MPH, RD, LDN

    Disorders:

    • PROP (PA)

  • Fatty Acid Oxidation Disorder Workgroup

    Chairs:

    • Sandy van Calcar, PhD, RD, CD
    • Mary Sowa, MS, RD, CSP

    Disorders:

    • VLCAD
    • MCAD

Each workgroup develops multiple products for each disorder:

Due to our rigorous process, each guideline takes approximately one year to complete. Once published, guidelines and toolkits are available to metabolic dietitians, physicians and other clinicians.

All products are reviewed periodically and updated as new published literature and related information becomes available.

© 2006-2015   —   SOUTHEAST REGIONAL GENETICS NETWORK   —   A HRSA SUPPORTED PARTNERSHIP   —   GRANT #UH7MC30772