Family Health After Predictive Huntington Disease (HD) Testing

National Institutes of Health (NIH)

Status: Completed

Conditions: Huntington Disease

Treatments: Genetic: Mutation in the gene

Study type: Observational

Funder types: NIH

Identifiers

NCT00075140

1R01NR007970-01

Details and patient eligibility

About

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).

Full 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.

Enrollment: 422 patients

Sex: All

Volunteers: No Healthy Volunteers

Inclusion and exclusion criteria

• Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease

Trial design

422 participants in 1 patient group

1

Description:

All Participants hav a family member with Huntington Disease

Treatment:

Genetic: Mutation in the gene