Prospective Huntington At Risk Observational Study
PHAROS
1 other identifier
observational
1,001
2 countries
42
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jul 1999
Longer than P75 for all trials
42 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
July 9, 1999
CompletedFirst Submitted
Initial submission to the registry
January 23, 2003
CompletedFirst Posted
Study publicly available on registry
January 24, 2003
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 17, 2009
CompletedStudy Completion
Last participant's last visit for all outcomes
December 17, 2009
CompletedSeptember 3, 2024
August 1, 2024
10.4 years
January 23, 2003
August 29, 2024
Conditions
Keywords
Eligibility Criteria
HD Community
You may qualify if:
- 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.
You may not qualify if:
- 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
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (42)
University of Alabama
Birmingham, Alabama, United States
Mayo Clinic Arizona
Phoenix, Arizona, United States
University of California at San Diego
La Jolla, California, United States
UCLA School of Medicine
Los Angeles, California, United States
University of California, Davis
Sacramento, California, United States
Colorado Neurological Institute
Englewood, Colorado, United States
University of Connecticut
Hartford, Connecticut, United States
Institute for Neurodegenerative Disorders
New Haven, Connecticut, United States
University of Miami School of Medicine
Miami, Florida, United States
University of South Florida
Tampa, Florida, United States
Emory University
Atlanta, Georgia, United States
Rush University Medical Center
Chicago, Illinois, United States
Indiana University School of Medicine
Indianapolis, Indiana, United States
University of Iowa
Iowa City, Iowa, United States
University of Kansas Medical Center
Kansas City, Kansas, United States
Hereditary Neurological Disease Center
Wichita, Kansas, 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
University of Michigan
Ann Arbor, Michigan, United States
Hennepin County Medical Center
Minneapolis, Minnesota, United States
Washington University School of Medicine
St Louis, Missouri, United States
UMDNJ Huntington Disease Service Center
Stratford, New Jersey, United States
Albany Medical College
Albany, New York, United States
North Shore-LIJ Health System
Manhasset, New York, United States
Columbia University
New York, New York, United States
University of Rochester
Rochester, New York, United States
Wake Forest University Baptist Medical Center
Winston-Salem, North Carolina, United States
Ohio State University
Columbus, Ohio, United States
Oregon Health and Science University
Portland, Oregon, United States
University of Pennsylvania
Philadelphia, Pennsylvania, United States
NeuroHealth Parkinson's Disease Movement Disorders Center
Pawtucket, Rhode Island, United States
Baylor College of Medicine
Houston, Texas, United States
University of Virginia
Charlottesville, Virginia, United States
University of Washington and VA Puget Sound
Seattle, Washington, United States
Medical College of Wisconsin-Milwaukee
Milwaukee, Wisconsin, United States
University of Calgary
Calgary, Alberta, Canada
University of Alberta
Edmonton, Alberta, Canada
University of British Columbia
Vancouver, British Columbia, Canada
The Centre for Addiction and Mental Health
Markham, Ontario, Canada
Hotel-Dieu Hospital-CHUM
Montreal, Quebec, Canada
Related Publications (2)
Huntington Study Group PHAROS Investigators. At risk for Huntington disease: The PHAROS (Prospective Huntington At Risk Observational Study) cohort enrolled. Arch Neurol. 2006 Jul;63(7):991-6. doi: 10.1001/archneur.63.7.991.
PMID: 16831969BACKGROUNDOster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K; Huntington Study Group PHAROS Investigators. Fear of health insurance loss among individuals at risk for Huntington disease. Am J Med Genet A. 2008 Aug 15;146A(16):2070-7. doi: 10.1002/ajmg.a.32422.
PMID: 18627059DERIVED
Related Links
Biospecimen
Blood sample
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Ira Shoulson, M.D.
University of Rochester
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- NETWORK
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
January 23, 2003
First Posted
January 24, 2003
Study Start
July 9, 1999
Primary Completion
December 17, 2009
Study Completion
December 17, 2009
Last Updated
September 3, 2024
Record last verified: 2024-08