Family Health After Predictive Huntington Disease (HD) Testing

NCT ID: NCT00075140

Last Updated: 2009-01-16

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

422 participants

Study Classification

OBSERVATIONAL

Study Start Date

2001-09-30

Study Completion Date

2008-10-31

Brief Summary

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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

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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

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Huntington Disease

Study Groups

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1

All Participants hav a family member with Huntington Disease

Mutation in the gene

Intervention Type GENETIC

Interventions

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Mutation in the gene

Intervention Type GENETIC

Eligibility Criteria

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Inclusion Criteria

* Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute of Nursing Research (NINR)

NIH

Sponsor Role lead

Responsible Party

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University of Iowa

Principal Investigators

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Janet K Williams, PhD, RN, FAAN

Role: PRINCIPAL_INVESTIGATOR

University of Iowa

Locations

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The University of Iowa College of Nursing

Iowa City, Iowa, United States

Site Status

Countries

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United States

Other Identifiers

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1R01NR007970-01

Identifier Type: NIH

Identifier Source: org_study_id

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