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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.
Sponsor:
ClinicalTrials.gov Identifier:
NCT01659749
First Posted: August 8, 2012
Last Update Posted: December 11, 2015
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
Information provided by (Responsible Party):
Rani Singh, Emory University
  Purpose
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 Intervention
Pregnancy Phenylketonuria Behavioral: Metabolic camp

Study Type: Interventional
Study Design: 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).

Resource links provided by NLM:


Further study details as provided by Rani Singh, Emory University:

Enrollment: 35
Study Start Date: June 1995
Study Completion Date: June 2000
Primary Completion Date: June 2000 (Final data collection date for primary outcome measure)
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.
  Eligibility

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
  Contacts and Locations
No Contacts or Locations Provided
  More Information

Responsible Party: Rani Singh, Professor, Emory University
ClinicalTrials.gov Identifier: NCT01659749     History of Changes
Other Study ID Numbers: IRB00002447a
NIH NCRR M01-RR00039
First Submitted: August 6, 2012
First Posted: August 8, 2012
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