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

Study on education, support, and nutrition's impact on pregnancy with phenylketonuria.

Recruiting
11 years and older
Female
Phase N/A

Phenylketonuria (PKU) and Maple Syrup Urine Disease (MSUD) are rare genetic disorders. This study focuses on teaching young women with PKU or MSUD about their condition and nutrition in a special camp setting. The camp, called Metabolic Camp, is a week-long program where girls and women age 11 and up can learn about managing their diets to reduce risks like miscarriages and birth defects. The program also collects important data to help improve understanding of these diseases.

  • Participation: Camp lasts one week. Participants must submit food records and blood samples.
  • Eligibility: Females with PKU or MSUD, age 11 or older. Healthy controls can be adult camp counselors.
  • Benefits: Provides education, social support, and improves disease management knowledge.

If you have PKU or MSUD and are interested in participating, you will need to provide informed consent. This camp not only helps individuals manage their conditions better but also provides researchers with valuable data to improve overall treatment and understanding of these disorders.

Study details
    Pregnancy
    Phenylketonuria

NCT01659749

Emory University

13 December 2024

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