NCT00075140

Family Health After Predictive Huntington Disease (HD) Testing

Family Health After Predictive Huntington Disease Testing

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 422 (actual)
• Sponsor: National Institute of Nursing Research (NINR) · NIH
• Sex: All
• Age: —
• Healthy volunteers: Not accepted

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 description

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.

Conditions

• Huntington Disease

Interventions

Type	Name	Description
GENETIC	Mutation in the gene

Timeline

• Start date: 2001-09-01
• Primary completion: 2008-10-01
• Completion: 2008-10-01
• First posted: 2004-01-05
• Last updated: 2009-01-16

Locations

1 site across 1 country: United States