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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
Diagnosed with PKU or other aminoacidopathy, female, age 11 or older, able to provide informed consent
Disqualifiers
Those not fitting the inclusion 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
Trial design
Single group
Treatments tested in this trial
Metabolic camp
BehavioralTo use an recreational camp setting to instruct PKU females of reproductive age how to make responsible dietary and reproductive decisions.
Treatment groups
Trial outcomes
Primary outcomes
Change in plasma Amino Acid concentration
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 Phenylalanine
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.
Sponsors and contacts
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