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RECRUITINGINTERVENTIONAL

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).

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

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 May Be Eligible (Plain English)

Who May Qualify: - Diagnosed with PKU or other aminoacidopathy, female, age 11 or older, able to provide willing to sign a consent form Who Should NOT Join This Trial: - 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 willing to sign a consent form - Willing and able to comply with relevant camp guidelines and study procedures Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
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

Treatments Being Tested

BEHAVIORAL

Metabolic camp

To use an recreational camp setting to instruct PKU females of reproductive age how to make responsible dietary and reproductive decisions.

Locations (1)

Emory University Department of Human Genetics
Atlanta, Georgia, United States