Educational, Social Support, and Nutritional Interventions and Their Cumulative Effect on Pregnancy Outcomes and Quality of Life in Teen and Adult Women With Phenylketonuria
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ClinicalTrials.gov Identifier: NCT01659749 |
Recruitment Status
:
Completed
First Posted
: August 8, 2012
Last Update Posted
: December 11, 2015
|
Sponsor:
Emory University
Information provided by (Responsible Party):
Rani Singh, Emory University
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Brief Summary:
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.
Condition or disease | Intervention/treatment | Phase |
---|---|---|
Pregnancy Phenylketonuria | Behavioral: Metabolic camp | Not Applicable |
Study Type : | Interventional (Clinical Trial) |
Actual Enrollment : | 35 participants |
Intervention Model: | Single Group Assignment |
Masking: | None (Open Label) |
Primary Purpose: | Prevention |
Official Title: | 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 : | June 1995 |
Actual Primary Completion Date : | June 2000 |
Actual Study Completion Date : | June 2000 |
Resource links provided by the National Library of Medicine

Genetics Home Reference related topics:
Maple syrup urine disease
Phenylketonuria
Tetrahydrobiopterin deficiency
MedlinePlus related topics:
Phenylketonuria
Genetic and Rare Diseases Information Center resources:
Phenylketonuria
Maple Syrup Urine Disease
Inborn Amino Acid Metabolism Disorder
U.S. FDA Resources
Intervention Details:
-
Behavioral: Metabolic camp
To use an recreational camp setting to instruct PKU females of reproductive age how to make responsible dietary and reproductive decisions.
Information from the National Library of Medicine

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Ages Eligible for Study: | 12 Years and older (Child, Adult, Senior) |
Sexes Eligible for Study: | Female |
Accepts Healthy Volunteers: | Yes |
Criteria
Inclusion Criteria:
- Diagnosed with PKU, female, age 12 or older, able to provide informed consent
Exclusion Criteria:
- Those not fitting the inclusion criteria
No Contacts or Locations Provided
Responsible Party: | Rani Singh, Professor, Emory University |
ClinicalTrials.gov Identifier: | NCT01659749 History of Changes |
Other Study ID Numbers: |
IRB00002447a NIH NCRR M01-RR00039 |
First Posted: | August 8, 2012 Key Record Dates |
Last Update Posted: | December 11, 2015 |
Last Verified: | December 2015 |
Keywords provided by Rani Singh, Emory University:
Genetics Metabolic Nutrition Maternal PKU Phenylketonuria (PKU) |
Additional relevant MeSH terms:
Phenylketonurias Brain Diseases, Metabolic, Inborn Brain Diseases, Metabolic Brain Diseases Central Nervous System Diseases |
Nervous System Diseases Amino Acid Metabolism, Inborn Errors Metabolism, Inborn Errors Genetic Diseases, Inborn Metabolic Diseases |