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Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria

Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria (PKU) or Maple Syrup Urine Disease (MSUD).

Who can join

Ages 11 and older · Women · Healthy volunteers welcome

Inclusion Criteria:

* Diagnosed with PKU or other aminoacidopathy, female, age 11 or older, able to provide informed consent

Exclusion Criteria:

* Those not fitting the inclusion criteria

Inclusion Criteria for healthy controls

Individuals eligible to participate in this study must meet all of the following criteria:

* Adult camp counselors or staff determined to be in good health.
* Not diagnosed with PKU, MSUD or other hereditary metabolic disorder
* Willing and able to provide written informed consent
* Willing and able to comply with relevant camp guidelines and study procedures

About the study

The purpose of this project is to study the effectiveness of teaching teens and young women with Phenylketonuria (PKU) or Maple Syrup Urine Disease (MSUD) about their disease and nutrition related issues in a camp environment. It will also look at pregnancy outcome results in women with PKU who attended Metabolic Camp and compare their results to other women with PKU who have not attended the Metabolic Camp.

What is being tested

• Metabolic camp (behavioral)

Sponsor: Emory University · Participants: 200 · Started: 1995-06

Contact the study team

• Rani H Singh, PhD RD · Phone: 4047278519
• Kristen Narlow, MS RD · Phone: 4047788610

Official record on ClinicalTrials.gov — NCT01659749

Locations in the U.S.

Conditions

• Phenylketonuria

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.