The PKU Nutrition Management Guideline is part of a larger project undertaken by the Southeast Newborn Screening and Genetics Collaboration – HRSA Region 3 (SERC) and the Genetic Metabolic Dietitians International (GMDI) to develop nutrition management guidelines for inherited metabolic disorders (IMD).
The purpose of this guideline is to foster optimal nutrition management of individuals with PKU and reduce the uncertainty and variability in the management of this disorder to allow for best outcomes.
The target population includes individuals with PKU at all life stages from the newborn period, through childhood and adolescence, to ongoing management in adult years, and during pregnancy. It also includes guidance for individuals who were late-diagnosed or are returning to treatment and those pairing dietary treatment with other treatment modalities.
The guideline is intended for use by all who provide care and advice for individuals with PKU, including: metabolic dietitians, physicians, and other health-care professionals, researchers, industry partners, public health personnel, third party health care payers, and PKU advocacy groups.
The development of nutrition guidelines is a joint effort between the Southeast Regional Newborn Screening Collaborative (SERC) and Genetic Metabolic Dietitians International (GMDI).
Funding for this project has been provided to SERC by the Health Resources and Services Administration (HRSA): grant # H46MC24090. GMDI received an unrestricted education grant from National PKU Alliance for partial funding of a dietitian consultant and the Nominal Group meeting.
Contents of the guideline include: