Trial record 2 of 2 for:
"Maple Syrup Urine Disease" OR "maple syrup urine disease"
Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria
This study has been completed.
Information provided by (Responsible Party):
Dawn Laney, MS, CCRC, Emory University
First received: August 6, 2012
Last updated: December 5, 2013
Last verified: December 2013
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.
Behavioral: Metabolic camp
||Intervention Model: Single Group Assignment
Masking: Open Label
Primary Purpose: Prevention
||Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria (PKU) or Maple Syrup Urine Disease (MSUD).
| Study Start Date:
| Study Completion Date:
| Primary Completion Date:
||June 2000 (Final data collection date for primary outcome measure)
Behavioral: Metabolic camp
To use an recreational camp setting to instruct PKU females of reproductive age how to make responsible dietary and reproductive decisions.
|Ages Eligible for Study:
||12 Years and older
|Genders Eligible for Study:
|Accepts Healthy Volunteers:
- Diagnosed with PKU, female, age 12 or older, able to provide informed consent
- Those not fitting the inclusion criteria
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study.
To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below.
For general information, see Learn About Clinical Studies.
No Contacts or Locations Provided
No publications provided
||Dawn Laney, MS, CCRC, Instructor, Emory University
History of Changes
|Other Study ID Numbers:
||IRB00002447a, NIH NCRR M01-RR00039
|Study First Received:
||August 6, 2012
||December 5, 2013
||United States: Food and Drug Administration
United States: Institutional Review Board
Keywords provided by Emory University:
Additional relevant MeSH terms:
ClinicalTrials.gov processed this record on October 23, 2014
Maple Syrup Urine Disease
Amino Acid Metabolism, Inborn Errors
Brain Diseases, Metabolic
Brain Diseases, Metabolic, Inborn
Central Nervous System Diseases
Genetic Diseases, Inborn
Metabolism, Inborn Errors
Nervous System Diseases