Prospective Huntington At Risk Observational Study
- Conditions
- Huntington Disease
- Registration Number
- NCT00052143
- Lead Sponsor
- Huntington Study Group
- Brief Summary
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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 1001
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (42)
UCLA School of Medicine
🇺🇸Los Angeles, California, United States
Colorado Neurological Institute
🇺🇸Englewood, Colorado, United States
Rush University Medical Center
🇺🇸Chicago, Illinois, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States
University of Maryland at Baltimore
🇺🇸Baltimore, Maryland, United States
Boston University School of Medicine
🇺🇸Boston, Massachusetts, United States
Massachusetts General Hospital
🇺🇸Boston, Massachusetts, United States
Ohio State University
🇺🇸Columbus, Ohio, United States
The Centre for Addiction and Mental Health
🇨🇦Markham, Ontario, Canada
University of Washington and VA Puget Sound
🇺🇸Seattle, Washington, United States
University of Alabama
🇺🇸Birmingham, Alabama, United States
Mayo Clinic Arizona
🇺🇸Phoenix, Arizona, United States
University of California, Davis
🇺🇸Sacramento, California, United States
University of California at San Diego
🇺🇸La Jolla, California, United States
University of Connecticut
🇺🇸Hartford, Connecticut, United States
Emory University
🇺🇸Atlanta, Georgia, United States
Institute for Neurodegenerative Disorders
🇺🇸New Haven, Connecticut, United States
University of Miami School of Medicine
🇺🇸Miami, Florida, United States
Indiana University School of Medicine
🇺🇸Indianapolis, Indiana, United States
Hereditary Neurological Disease Center
🇺🇸Wichita, Kansas, United States
University of Michigan
🇺🇸Ann Arbor, Michigan, United States
Hennepin County Medical Center
🇺🇸Minneapolis, Minnesota, United States
University of Iowa
🇺🇸Iowa City, Iowa, United States
University of Rochester
🇺🇸Rochester, New York, United States
UMDNJ Huntington Disease Service Center
🇺🇸Stratford, New Jersey, United States
Albany Medical College
🇺🇸Albany, New York, United States
Columbia University
🇺🇸New York, New York, United States
North Shore-LIJ Health System
🇺🇸Manhasset, New York, United States
Wake Forest University Baptist Medical Center
🇺🇸Winston-Salem, North Carolina, United States
Oregon Health and Science University
🇺🇸Portland, Oregon, United States
University of Pennsylvania
🇺🇸Philadelphia, Pennsylvania, United States
Medical College of Wisconsin-Milwaukee
🇺🇸Milwaukee, Wisconsin, United States
Baylor College of Medicine
🇺🇸Houston, Texas, United States
University of Calgary
🇨🇦Calgary, Alberta, Canada
NeuroHealth Parkinson's Disease Movement Disorders Center
🇺🇸Pawtucket, Rhode Island, United States
University of Virginia
🇺🇸Charlottesville, Virginia, United States
University of Alberta
🇨🇦Edmonton, Alberta, Canada
University of British Columbia
🇨🇦Vancouver, British Columbia, Canada
Hotel-Dieu Hospital-CHUM
🇨🇦Montreal, Quebec, Canada
Washington University School of Medicine
🇺🇸Saint Louis, Missouri, United States
University of South Florida
🇺🇸Tampa, Florida, United States
University of Kansas Medical Center
🇺🇸Kansas City, Kansas, United States