Educational and nutritional support for women with Phenylketonuria during pregnancy

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This project aims to evaluate the effectiveness of an educational and social support program, known as Metabolic Camp, for teen and adult women diagnosed with Phenylketonuria (PKU) or Maple Syrup Urine Disease (MSUD). The camp provides a supportive environment where participants learn about disease management and nutrition, with the goal of improving pregnancy outcomes and quality of life. The study will compare pregnancy outcomes of women who attended the camp with those who did not, assessing changes in knowledge, dietary compliance, and overall well-being. Data will be collected through a structured research protocol before and after the camp.

Why it matters

Who can join: the full rules

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

Where it's running

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

Study contacts

• Principal investigator: Rani H Singh, PhD RD — Emory University
• Study coordinator: Rani H Singh, PhD RD
• Email: rsingh@emory.edu
• Phone: 4047278519

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.