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Family Health After Predictive Huntington Disease (HD) Testing



Family Health After Predictive Huntington Disease (HD) Testing

For Condition: Huntington Disease
Status: Recruiting
Sponsor(s): National Institute of Nursing Research (NINR) ,
Synopsis: 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).
Details: 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:
Study Type:  Interventional, Prevention, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Safety/Efficacy Study
Minimum Age/Maximum Age: /
Genders: Both
Protocol Entry Criteria: - Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease
Total Enrollment: 

Location and Contact Information:

Iowa University College of Nursing *Recruiting*
Iowa City,  Iowa,  52242
United States
Recruiting Janet  Williams 319-335-7046


Additional Information:
Study ID Numbers:  1-R01-NR007970-01; 
Study Start Date: September 2001
Record last reviewed: January 2004
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00075140

Other Huntington Disease Studies:
1. Neurobiological Predictors of Huntington’s Disease (PREDICT-HD)

2. Family Health After Predictive Huntington Disease (HD) Testing

3. Brain Tissue Collection for Neuropathological Studies

4. Prospective Huntington At Risk Observational Study (PHAROS)

Related Studies:

Other Huntington Disease Clinical Trials
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Other Iowa City Clinical Trials

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