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Home > "P" Clinical Trials Conditions > Prospective Huntington At Risk Observational Study (PHAROS)  Prospective Huntington At Risk Observational Study (PHAROS)
Prospective Huntington At Risk Observational Study (PHAROS)
For Condition: Huntington Disease
Status: No longer recruiting
Sponsor(s): National Institute of Neurological Disorders and Stroke (NINDS) , National Human Genome Research Institute (NHGRI)
Synopsis: 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.
Details: 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:
Study Type: Observational, Natural History
Minimum Age/Maximum Age: 26 Years/55 Years
Genders: Both
Protocol Entry Criteria: Inclusion: - Men and women between 26-55 years of age; - Who are at risk for HD by virtue of having (or had) a parent or sibling with the illness; - Who have never been tested for the HD gene, and who do not desire to be tested for the HD gene during the duration of the study; - Agree to blinded (sample will be coded) genetic testing of the HD gene; and - Who have never been diagnosed with HD. Exclusion: Individuals Who: - have been diagnosed with HD; - are taking antipsychotic medications; - use antiemetic (anti-nausea) medications with on a regular basis (greater than 3 times per month); or - exhibit clinical signs/symptoms of psychosis at the screening visit
Total Enrollment: 1001
Location and Contact Information:
Overall Study Official:
IraShoulson, Principal Investigator, University of Rochester
University of South Florida
Tampa, Florida,
United States
Medical College of Wisconsin-Milwaukee
Milwaukee, Wisconsin,
United States
University of Alabama
Birmingham, Alabama,
United States
University of California at San Diego
LaJolla, California,
United States
Washington University School of Medicine
St. Louis, Missouri,
United States
University of Maryland at Baltimore
Baltimore, Maryland,
United States
UMDNJ Huntington Disease Service Center
Stratford, New Jersey,
United States
Baylor College of Medicine
Houston, Texas,
United States
Rush-Presbyterian-St. Luke’s Medical Center
Chicago, Illinois,
United States
Hennepin County Medical Center
Minneapolis, Minnesota,
United States
University of Miami School of Medicine
Miami, Florida,
United States
University of British Columbia
Vancouver, British Columbia,
Canada
Hereditary Neurological Disease Center
Wichita, Kansas,
United States
Columbia University
New York City, New York,
United States
University of Iowa
Iowa City, Iowa,
United States
University of Pennsylvania
Philadelphia, Pennsylvania,
United States
Institute for Neurodegenerative Disorders
New Haven, Connecticut,
United States
Colorado Neurological Institute
Englewood, Colorado,
United States
University of Toronto
Markham, Ontario,
Canada
Boston University School of Medicine
Boston, Massachusetts,
United States
University of Rochester
Rochester, New York,
United States
Oregon Health and Science University
Portland, Oregon,
United States
University of Michigan
Ann Arbor, Michigan,
United States
Massachusetts General Hospital
Boston, Massachusetts,
United States
University of Washington and VA Puget Sound
Seattle, Washington,
United States
Winnipeg Clinic
Winnipeg, Manitoba,
Canada
Wake Forest University School of Medicine
Winston Salem, North Carolina,
United States
Hotel-Dieu Hospital-CHUM
Montreal, Quebec,
Canada
University of Kansas Medical Center
Kansas City, Kansas,
United States
University of California, Davis
Sacramento, California,
United States
University of Connecticut
Hartford, Connecticut,
United States
UCLA School of Medicine
Los Angeles, California,
United States
University of Virginia
Charlottesville, Virginia,
United States
Albany Medical College
Albany, New York,
United States
University of Alberta
Edmonton, Alberta,
Canada
Johns Hopkins University
Baltimore, Maryland,
United States
Ohio State University
Columbus, Ohio,
United States
Memorial Hospital of Rhode Island
Pawtucket, Rhode Island,
United States
Emory University
Atlanta, Georgia,
United States
Indiana University School of Medicine
Indianapolis, Indiana,
United States
North Shore University Hospital
Manhasset, New York,
United States
University of Calgary
Calgary, Alberta,
Canada
Additional Information:
Study ID Numbers: R01HG02449;
Study Start Date: July 1999
Record last reviewed: April 2004
Additional information available at: clinicaltrials.gov
Clinicaltrials.gov Reference link: NCT00052143
Other Huntington Disease Studies:
1. Family Health After Predictive Huntington Disease (HD) Testing
2. Neurobiological Predictors of Huntington’s Disease (PREDICT-HD)
3. Prospective Huntington At Risk Observational Study (PHAROS)
4. Brain Tissue Collection for Neuropathological Studies
Related Studies:
Other Huntington Disease Clinical Trials
Other New Jersey Clinical Trials
Other Stratford Clinical Trials
Prospective Huntington At Risk Observational Study (PHAROS)
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