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

Launched by EMORY UNIVERSITY · Aug 7, 2012

Keywords

ClinConnect Summary

This clinical trial is exploring how helpful it can be for young women and teens with a condition called Phenylketonuria (PKU) to learn about their health and nutrition in a supportive camp setting. The goal is to see if attending this "Metabolic Camp" can lead to better pregnancy outcomes and an improved quality of life for women with PKU compared to those who haven't attended the camp.

To participate, women must be diagnosed with PKU or a similar condition, be at least 11 years old, and able to give their consent. Healthy adults who work at the camp can also join as volunteers. Participants can expect to engage in educational activities, receive social support, and learn about nutrition, all aimed at improving their understanding and management of PKU during pregnancy. This study is currently recruiting participants, and their experiences could help improve care for others with this condition in the future.

Gender

FEMALE

Eligibility criteria

• 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