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

Recruiting now · Not applicable

Conditions studied: Pregnancy, Phenylketonuria

In brief

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.

Key facts

Study ID

NCT01659749

Run by

Emory University

People needed

200

Starts

1995-06-01

Expected to finish

2037-07-01

Last updated by the study team

2026-05-07

Who can join

Age: 11 and older. Sex: female. Healthy volunteers: accepted.

You may qualify if…

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

You may not qualify if…

• 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

Where it is running

• Emory University Department of Human Genetics — Atlanta, Georgia, United States (enrolling)

Full record on ClinicalTrials.gov

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