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 guideline development. Based on their findings, Four workgroups from all 7 HRSA regions are each working on one of the following topics: MSUD (Amino Acidopathies workgroup), PKU (PKU workgroup), PROP (Organic Acidopathies workgroup), VLCAD and MCAD (Fatty Acid Oxidation Disorder workgroup). Each workgroup will develop one guideline at a time which will take approximately one year to complete. Once published, the guidelines will be available online to metabolic dietitians, physicians and other clinicians.