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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 effects on pregnancy in PKU women.

Recruiting
11 years and older
Female
Phase N/A

Phenylketonuria (PKU) is a condition where the body can’t break down an amino acid called phenylalanine, while Maple Syrup Urine Disease (MSUD) affects how the body processes certain proteins. Both are inherited metabolic disorders (IMD). This study focuses on a special camp for girls and women with PKU or MSUD, called Metabolic Camp. The camp teaches them about their condition and the importance of diet. The aim is to see if this helps improve pregnancy outcomes and overall life quality. Women with PKU who attend the camp are compared to those who do not. Campers submit food records and blood samples to check their health, but these are normal procedures for their condition. Extra tests might be done for research purposes, like checking bone health and mental wellbeing. The camp is a week-long program that also provides support and learning opportunities for researchers.

  • Camp lasts one week, with educational and social support.
  • Participants provide blood samples and food records for health checks.
  • Research participation requires informed consent.
Study details
    Pregnancy
    Phenylketonuria

NCT01659749

Emory University

6 April 2025

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