Clinical Trial: Family Health After Predictive Huntington Disease (HD) Testing
Study Status: Completed
Recruit Status: Completed
Study Type: Observational
Official Title: Family Health After Predictive Huntington Disease Testing
Brief Summary: 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).
Detailed Summary:
This is an observational study with three phases. 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.
Sponsor: National Institute of Nursing Research (NINR)
Current Primary Outcome: Impact of a positive HD test or presence of HD on a family members perceptions of: health problems, emotional and functional health status, resources/strategies for managing problems, helpfulness, and services needed to help family members cope. [ Time Frame: Over 6 yr span ]
Original Primary Outcome:
Current Secondary Outcome: Describe the health care needs, management strategies, and needs for health and social services of a broader sample of relatives/significant others in families in which a person has a gene mutation for HD. [ Time Frame: Over 6 yr span ]
Original Secondary Outcome:
Information By: National Institute of Nursing Research (NINR)
Dates:
Date Received: January 2, 2004
Date Started: September 2001
Date Completion:
Last Updated: January 15, 2009
Last Verified: January 2009
