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Educational, Social Support, and Nutritional Interventions for PKU and MSUD

This study is looking at how well a "Metabolic Camp" helps teen and adult women with Phenylketonuria (PKU) or Maple Syrup Urine Disease (MSUD) manage their condition. The camp teaches about diet and making healthy choices. Researchers want to see if attending this camp improves pregnancy outcomes for women with PKU compared to those who don't attend. They will measure changes in amino acid levels in the blood and how much phenylalanine (a substance people with PKU need to limit) is in their diet. Women aged 11 and older who have PKU or another aminoacidopathy can join. The study is currently unclear about its recruitment status and aims to enroll 200 participants.

Study design
This is an interventional study planning to enroll 200 participants. It uses a behavioral intervention called "Metabolic camp."
What's involved
Participants will attend a week-long recreational camp. Measurements of blood amino acid concentration and dietary intake will be taken at baseline and after one week.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for changes in plasma amino acid concentration and dietary intake of Phenylalanine, measured at baseline and Week 1.

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NCT01659749

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
NAAges 11+InterventionalPrevention
Emory University
~200 participants
Updated 2026-05-07 on ClinicalTrials.gov
What's tested:Metabolic camp

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Change in plasma Amino Acid concentration
Measured over Baseline, Week 1
+1 more outcome measured

Conditions

Pregnancy
Phenylketonuria

Explore related trials

Maple Syrup Urine DiseasePhenylketonuria

Where it's being run

1 sites across 1 states
Georgia1

Study leadership

  • Rani H Singh, PhD RD · PRINCIPAL_INVESTIGATOR · Emory University

Who to contact

Rani H Singh, PhD RD
[email protected]
4047278519
Email the study team

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Eligibility criteria

Inclusion

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

What this trial measures

  • Change in plasma Amino Acid concentrationBaseline, Week 1

    Concentration of Phenylalanine in plasma (measured in mg/dL) will be measured the first day of metabolic camp and at the last day of the camp.

  • Change in Dietary intake of PhenylalanineBaseline, Week 1

    Dietary intake of Phenylalanine (measured in mg/Kg) will be measured the first day of metabolic camp and at the last day of the camp, using a three-day diet food record that has been completed at baseline and post-camp.