Recruiting

Metabolic Camp

Sponsor:

Emory University

Code:

NCT01659749

Conditions

Pregnancy

Phenylketonuria

Eligibility Criteria

Sex: Female

Age: 11+

Healthy Volunteers: Accepted

Interventions

Metabolic camp

Study Details

Brief 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.

Conditions

Pregnancy

Phenylketonuria

Study ID

NCT01659749

Start date

Jun, 1995

Status verified date

May, 2026

Completion date

Jul, 2037

Anticipated

Primary completion date

Jul, 2035

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: Female

Age: 11+

Healthy Volunteers: Accepted

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

Study Design

Enrollment

200 participants

Anticipated

Intervention Model

Single group

Primary purpose

Prevention

Interventions and Outcome Measures

Arms

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.

Interventions

Metabolic camp

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

Primary outcome measure

  • Change in plasma Amino Acid concentration [ Time Frame: Baseline, Week 1 ]
  • Change in Dietary intake of Phenylalanine [ Time Frame: Baseline, Week 1 ]

Central Contacts and Locations

Central contacts

Rani H Singh, PhD RD

4047278519rsingh@emory.edu

Kristen Narlow, MS RD

4047788610kristen.narlow@emory.edu

Locations

Emory University Department of Human Genetics

Recruiting

Atlanta, Georgia, United States, 30322

Contacts

Rani H Singh, PhD RD

4047278519rsingh@emory.edu

More Information

Sponsor

Emory University

Last update posted

May 7, 2026

Last verified

May, 2026

Keywords

  • Genetics
  • Metabolic
  • Nutrition
  • Maternal PKU
  • Phenylketonuria (PKU)

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-10. This information was provided to ClinicalTrials.gov by Emory University on 2026-05-07.