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| Sponsored by: |
National Institute of Nursing Research (NINR) |
|---|---|
| Information provided by: | National Institute of Nursing Research (NINR) |
| ClinicalTrials.gov Identifier: | NCT00075140 |
Purpose
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).
| Condition | Intervention | Phase |
|---|---|---|
|
Huntington Disease |
Gene Transfer: Mutation in the gene |
Phase III |
| Study Type: | Interventional |
| Study Design: | Prevention, Non-Randomized, Open Label, Uncontrolled, Single Group Assignment, Safety/Efficacy Study |
| Official Title: | Family Health After Predictive Huntington Disease Testing |
| Study Start Date: | September 2001 |
| Estimated Study Completion Date: | June 2005 |
This is a Phase III study. 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.
Eligibility| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
Contacts and Locations| United States, Iowa | |
| Iowa University College of Nursing | Recruiting |
| Iowa City, Iowa, United States, 52242 | |
| Contact: Janet K Williams, PhD 319-335-7046 JANET-WILLIAMS@UIOWA.EDU | |
More Information
| Study ID Numbers: | 1-R01-NR007970-01 |
| Study First Received: | January 2, 2004 |
| Last Updated: | June 23, 2005 |
| ClinicalTrials.gov Identifier: | NCT00075140 |
| Health Authority: | United States: Federal Government |
|
Patient Care Management Family Huntington's Disease |
|
Ganglion Cysts Huntington disease Basal Ganglia Diseases Central Nervous System Diseases Brain Diseases Neurodegenerative Diseases Dyskinesias Cognition Disorders Chorea |
Delirium, Dementia, Amnestic, Cognitive Disorders Heredodegenerative Disorders, Nervous System Genetic Diseases, Inborn Mental Disorders Movement Disorders Dementia Huntington Disease Delirium |
|
Nervous System Diseases |
