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Clinical Trial Details — Status: Completed

Administrative data

NCT number NCT00075140
Other study ID # 1R01NR007970-01
Secondary ID
Status Completed
Phase Phase 3
First received January 2, 2004
Last updated January 15, 2009
Start date September 2001
Est. completion date October 2008

Study information

Verified date January 2009
Source National Institute of Nursing Research (NINR)
Contact n/a
Is FDA regulated No
Health authority United States: Federal Government
Study type Observational

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).


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.


Recruitment information / eligibility

Status Completed
Enrollment 422
Est. completion date October 2008
Est. primary completion date October 2008
Accepts healthy volunteers No
Gender Both
Age group N/A and older
Eligibility - Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease

Study Design

N/A


Related Conditions & MeSH terms


Intervention

Genetic:
Mutation in the gene


Locations

Country Name City State
United States The University of Iowa College of Nursing Iowa City Iowa

Sponsors (1)

Lead Sponsor Collaborator
National Institute of Nursing Research (NINR)

Country where clinical trial is conducted

United States, 

Outcome

Type Measure Description Time frame Safety issue
Primary 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. Over 6 yr span No
Secondary 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. Over 6 yr span No
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