Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria
Pregnancy, Phenylketonuria
About this trial
This is an interventional prevention trial for Pregnancy focused on measuring Genetics, Metabolic, Nutrition, Maternal PKU, Phenylketonuria (PKU)
Eligibility Criteria
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
Sites / Locations
- Emory University Department of Human GeneticsRecruiting
Arms of the Study
Arm 1
Other
Metabolic Camp
Metabolic Camp is an educational and social support program for females age 11 through adult with phenylketonuria (PKU) and maple syrup urine disease (MSUD), two inherited metabolic disorders (IMD). Camp provides a supportive environment for adolescent girls and women to learn about the importance of nutrition and diet self-management, with the intention of arresting the disease process and minimizing the instances of miscarriages and severe birth defects, which are high in this population. After 20+ years, Metabolic Camp is established as a unique, national program allowing up to 35 campers to live and learn during a week of nutritional support and productive activities, while simultaneously providing researchers an opportunity to gather important data.