RecruitingNot Applicable

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

United States200 participantsStarted 1995-06

Plain-language summary

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.

Who can participate

Age range11 Years

SexFEMALE

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

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

What they're measuring

Change in plasma Amino Acid concentration

Timeframe: Baseline, Week 1

Change in Dietary intake of Phenylalanine

Timeframe: Baseline, Week 1

Trial details

NCT IDNCT01659749

SponsorEmory University

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2035-07

Contact for this trial

Rani H Singh, PhD RD

4047278519 rsingh@emory.edu

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