Family Health After Predictive Huntington Disease (HD) Testing

Huntington Disease Clinical Trial

Official title: Family Health After Predictive Huntington Disease Testing

Status Completed

Clinical Trial 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).

Clinical Trial 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. ;

Study Design

N/A

Related Conditions & MeSH terms

• Huntington Disease

• NCT number: NCT00075140
• Study type: Observational
• Source: National Institute of Nursing Research (NINR)
• Status: Completed
• Phase: Phase 3
• Start date: September 2001
• Completion date: October 2008