title: Bridging evidence and consensus methodology for inherited metabolic disorders: creating nutrition guidelines.
abstract: OBJECTIVE
  The management of many inherited metabolic disorders (IMDs) is dependent on nutrition intervention, but few clinical management guidelines for these uncommon disorders exist. Clinicians are forced to make nutrition treatment decisions using limited data. This results in clinical variations in both service and cost. We describe a method for establishing management guidelines to help clinicians treat patients with IMDs.
  
  
  METHODS
  The Southeast Newborn Screening and Genetics Collaborative (Region 3) convened a group of nine national experts in metabolic nutrition to determine the pertinent issues in the development of nutrition management guidelines for IMDs. These experts were trained in evidence analysis and examined established consensus techniques for guideline development.
  
  
  RESULTS
  The workgroup developed a multi-step process for guideline development known as the Delphi-Nominal Group-Delphi-Field Testing methodology, which includes a review of scientific and grey (unpublished) literature, a Delphi survey of practice, a nominal group meeting to clarify discrepancies, a formulation of recommendations and a second Delphi round to assess the degree of consensus with the proposed recommendations. External review and field testing are also built into the process.
  
  
  CONCLUSIONS
  The evidence- and consensus-based method suggested for the development of nutrition management guidelines for IMDs will result in the production of consistent and accessible guidelines that can be created in a timely and cost-effective manner and offer a validated methodology to develop management guidelines for this field to optimize outcomes.
authors.affiliation: Department of Human Genetics, Emory University, School of Medicine, Metabolic Nutrition Program, PD Southeastern NBS and Genetics Collaborative (Region 3), Atlanta, GA, USA. rsingh@emory.edu
authors.forename: Rani H
authors.initials: RH
authors.lastname: Singh
authors.forename: Fran
authors.initials: F
authors.lastname: Rohr
authors.forename: Patricia L
authors.initials: PL
authors.lastname: Splett
mesh_terms: D032921:Consensus; D003697:Delphi Technique; D004035:Diet Therapy / Q000379:methods*; D055317:Evidence-Based Practice; D006801:Humans; D007231:Infant, Newborn; D008661:Metabolism, Inborn Errors / Q000175:diagnosis / Q000178:diet therapy*; D018673:Nutrition Policy; D017410:Practice Guidelines as Topic