Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria

Part of paid clinical trials in Atlanta, Georgia.

Sponsor
Emory University
Study ID
NCT01659749
Status
Recruiting
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Conditions

Eligibility Criteria

Sex
FEMALE
Age
11 Years - N/A
Healthy Volunteers
Accepted

Interventions

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

Study Details

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.

Key Dates

Start date
Jun 30, 1995
Status verified
May 2026
Primary completion
Jul 31, 2035
Completion
Jul 31, 2037

Study Design

Enrollment
200 participants (estimated)
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
PREVENTION

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.

Primary Outcome Measure

Change in plasma Amino Acid concentration [ Time Frame: Baseline, Week 1 ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Emory University Department of Human GeneticsAtlantaGeorgia30322
Rani H Singh, PhD RD
[email protected]
4047278519

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By research site
Emory University Department of Human Genetics· Atlanta, GA

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