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).

Status: Recruiting
Location: See location...
Intervention Type: Behavioral
Study Type: Interventional
Study Phase: Not Applicable

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.

Participation Requirements
Sex: Female
Minimum Age: 11
Healthy Volunteers: Accepts Healthy Volunteers

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

• 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

United States
Emory University Department of Human Genetics
Contact Information
Rani H Singh, PhD RD
Kristen Narlow, MS RD
Time Frame
Start Date: June 1995
Estimated Completion Date: July 2037
Target number of participants: 200
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.
Rani H Singh
Leads: Emory University

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