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Sponsored by: |
National Institute of Nursing Research (NINR) |
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Information provided by: | National Institute of Nursing Research (NINR) |
ClinicalTrials.gov Identifier: | NCT00075140 |
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 |
Genetic: Mutation in the gene |
Phase III |
Study Type: | Observational |
Official Title: | Family Health After Predictive Huntington Disease Testing |
Enrollment: | 422 |
Study Start Date: | September 2001 |
Study Completion Date: | October 2008 |
Primary Completion Date: | October 2008 (Final data collection date for primary outcome measure) |
Groups/Cohorts | Assigned Interventions |
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1
All Participants hav a family member with Huntington Disease
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Genetic: Mutation in the gene |
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.
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | No |
Sampling Method: | Probability Sample |
Family members or significant others, age 14 or older, of persons who 1) have received a positive result from predictive testing for a mutation in the HD gene, 2) are symptomatic and living at home, and 3) are symptomatic and are living in a long-term care institution were the population of interest for this study.
United States, Iowa | |
The University of Iowa College of Nursing | |
Iowa City, Iowa, United States, 52242 |
Principal Investigator: | Janet K Williams, PhD, RN, FAAN | University of Iowa |
Responsible Party: | University of Iowa ( Janet K. Williams, PhD, RN, FAAN ) |
Study ID Numbers: | 1-R01-NR007970-01 |
Study First Received: | January 2, 2004 |
Last Updated: | January 15, 2009 |
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 |