Family Health After Predictive Huntington Disease (HD) Testing

Official Title: “Family Health After Predictive Huntington Disease Testing”

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).

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.

Intervention(s) in this Clinical Trial

• Genetic: Mutation in the gene

Arms, Groups and Cohorts in this Clinical Trial

• : 1
  • All Participants hav a family member with Huntington Disease

Primary Measures

• 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
    Safety Issue?: No

Secondary Measures

• 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
    Safety Issue?: No

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

Gender Eligibility for this Clinical Trial: Both

Minimum Age for this Clinical Trial: N/A

Maximum Age for this Clinical Trial: N/A

Are Healthy Volunteers Accepted for this Clinical Trial?: No

Lead Investigator: National Institute of Nursing Research (NINR) NIH

Overall Clinical Trial Officials and Contacts

Janet K Williams, PhD, RN, FAAN Principal Investigator University of Iowa  

Information obtained from ClinicalTrials.gov on February 12, 2012

Link to the current ClinicalTrials.gov record. http://clinicaltrials.gov/show/NCT00075140

Study ID Number: 1-R01-NR007970-01

ClinicalTrials.gov Identifier: NCT00075140

Health Authority: United States: Federal Government