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Family Health After Predictive Huntington Disease (HD) Testing
This study is currently recruiting patients.
Sponsored by: | National Institute of Nursing Research (NINR) |
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Information provided by: | National Institute of Nursing Research (NINR) |
Purpose
The purpose of this study is to identify health management concerns and needs of family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease (HD).
Condition | Treatment or Intervention | Phase |
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Huntington Disease |
Gene Transfer: Mutation in the gene |
Phase III |
MedlinePlus related topics: Huntington's Disease
Genetics Home Reference related topics: Huntington disease
Study Type: Interventional
Study Design: Prevention, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Safety/Efficacy Study
Official Title: Family Health After Predictive Huntington Disease Testing
Study start: September 2001;
Study completion: June 2005
This is a Phase III study. In Phase 1, focus groups consisting of family members of persons with HD Gene mutation will be conducted and data collected to be analyzed through content analysis to identify salient themes and key issues. In Phase 2, a survey instrument will be developed and field-tested in order to describe the health care needs, management strategies, and needs for health and social services of relative/significant others of asymptomatic and symptomatic persons with the mutation in the gene for HD. In Phase 3, the survey will be distributed to family members of asymptomatic and symptomatic persons with mutation in the gene for HD and frequencies and comparisons of survey responses according to respondent characteristics will be reported.
Eligibility
Genders Eligible for Study: Both
Criteria
Location and Contact Information
More Information
U.S. National Library of Medicine, Contact NLM Customer Service | ||||||||||||||
National Institutes of Health, Department of Health & Human Services | ||||||||||||||
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