RECRUITING

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 Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

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).

Quick Facts

Study Start:1995-06
Study Completion:2037-07
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT01659749

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:11 Years
Sexes Eligible for Study:FEMALE
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Diagnosed with PKU or other aminoacidopathy, female, age 11 or older, able to provide informed consent
  1. * Those not fitting the inclusion criteria
  2. * Adult camp counselors or staff determined to be in good health.
  3. * Not diagnosed with PKU, MSUD or other hereditary metabolic disorder
  4. * Willing and able to provide written informed consent
  5. * Willing and able to comply with relevant camp guidelines and study procedures

Contacts and Locations

Study Contact

Rani H Singh, PhD RD
CONTACT
4047278519
rsingh@emory.edu
Kristen Narlow, MS RD
CONTACT
4047788610
kristen.narlow@emory.edu

Principal Investigator

Rani H Singh, PhD RD
PRINCIPAL_INVESTIGATOR
Emory University

Study Locations (Sites)

Emory University Department of Human Genetics
Atlanta, Georgia, 30322
United States

Collaborators and Investigators

Sponsor: Emory University

  • Rani H Singh, PhD RD, PRINCIPAL_INVESTIGATOR, Emory University

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date1995-06
Study Completion Date2037-07

Study Record Updates

Study Start Date1995-06
Study Completion Date2037-07

Terms related to this study

Keywords Provided by Researchers

  • Genetics
  • Metabolic
  • Nutrition
  • Maternal PKU
  • Phenylketonuria (PKU)

Additional Relevant MeSH Terms

  • Pregnancy
  • Phenylketonuria