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| Sponsors and Collaborators: |
University of Rochester National Human Genome Research Institute (NHGRI) National Institute of Neurological Disorders and Stroke (NINDS) |
|---|---|
| Information provided by: | National Institute of Neurological Disorders and Stroke (NINDS) |
| ClinicalTrials.gov Identifier: | NCT00052143 |
Purpose
The purpose of this study is to define the natural history and experiences of people who are at risk for developing Huntington's disease but who do not know their genetic status.
| Condition |
|---|
|
Huntington Disease |
| Study Type: | Observational |
| Study Design: | Cohort, Prospective |
| Official Title: | Prospective Huntington At Risk Observational Study (PHAROS) |
Blood sample
| Enrollment: | 1001 |
| Study Start Date: | July 1999 |
| Estimated Study Completion Date: | July 2010 |
| Estimated Primary Completion Date: | July 2010 (Final data collection date for primary outcome measure) |
Huntington's disease (HD) is a genetic disease characterized by changes in movement and behavior. To date, little research has been done on individuals who are at risk for developing the disease. PHAROS is an observational study designed to monitor people who are at risk for developing HD, and to survey their attitudes and beliefs about their "at-risk" status. Investigators hope this study will help answer some important questions about HD, such as: 1.) What are the earliest signs of HD and when do they start? 2.) How accurate are the measures that physicians use in detecting the onset of HD? 3.) What factors influence the age at which a person carrying the HD gene develops the illness? and 4.) In a group of people at risk for HD, how many will develop signs of the illness over a minimum three-year period of observation?
Participants in the study will be evaluated every 9 months (for 5 years) using the Unified Huntington's Disease Rating Scale (UHDRS)--a clinical tool which looks at movement, psychological and behavioral function. The participants will also be asked to complete surveys about their mood, life events, and attitudes or beliefs about being at risk for HD. A blood sample, taken at the beginning of the study, will be confidentially tested to determine if the participant has the abnormal gene for HD. Neither the participant nor any of the PHAROS physicians or coordinators will learn the results of individual gene tests.
The scientists hope that this study will provide essential information for future trials of experimental drugs for HD.
Eligibility| Ages Eligible for Study: | 26 Years to 55 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | Yes |
| Sampling Method: | Non-Probability Sample |
HD Community
Inclusion:
Exclusion:
Individuals Who:
Contacts and Locations
Show 42 Study Locations| Principal Investigator: | Ira Shoulson, M.D. | University of Rochester |
More Information
| Responsible Party: | University of Rochester ( Ira Shoulson, MD, Professor of Neurology ) |
| Study ID Numbers: | R01HG02449 |
| Study First Received: | January 23, 2003 |
| Last Updated: | February 13, 2008 |
| ClinicalTrials.gov Identifier: | NCT00052143 |
| Health Authority: | United States: Federal Government |
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Huntington's disease HD Huntington disease |
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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 |
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Nervous System Diseases |
