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Prospective Huntington At Risk Observational Study (PHAROS)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT00052143
Recruitment Status : Unknown
Verified February 2008 by Huntington Study Group.
Recruitment status was:  Active, not recruiting
First Posted : January 24, 2003
Last Update Posted : April 16, 2009
National Human Genome Research Institute (NHGRI)
National Institute of Neurological Disorders and Stroke (NINDS)
Information provided by:
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.

Condition or disease
Huntington Disease

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.

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Study Type : Observational
Actual Enrollment : 1001 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Prospective Huntington At Risk Observational Study (PHAROS)
Study Start Date : July 1999
Estimated Primary Completion Date : July 2010
Estimated Study Completion Date : July 2010

Resource links provided by the National Library of Medicine

Biospecimen Retention:   Samples With DNA
Blood sample

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   26 Years to 55 Years   (Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
HD Community


  • 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.


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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT00052143

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Sponsors and Collaborators
Huntington Study Group
National Human Genome Research Institute (NHGRI)
National Institute of Neurological Disorders and Stroke (NINDS)
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Principal Investigator: Ira Shoulson, M.D. University of Rochester
Additional Information:
Publications automatically indexed to this study by Identifier (NCT Number):
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Responsible Party: Ira Shoulson, MD, Professor of Neurology, University of Rochester Identifier: NCT00052143    
Other Study ID Numbers: R01HG002449 ( U.S. NIH Grant/Contract )
First Posted: January 24, 2003    Key Record Dates
Last Update Posted: April 16, 2009
Last Verified: February 2008
Keywords provided by Huntington Study Group:
Huntington's disease
Huntington disease
Additional relevant MeSH terms:
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Huntington Disease
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Cognition Disorders
Neurocognitive Disorders
Mental Disorders