Prospective Huntington At Risk Observational Study (PHAROS)

The recruitment status of this study is unknown because the information has not been verified recently.
Verified February 2008 by Huntington Study Group.
Recruitment status was  Active, not recruiting
Information provided by:
Huntington Study Group Identifier:
First received: January 23, 2003
Last updated: April 15, 2009
Last verified: February 2008

January 23, 2003
April 15, 2009
July 1999
July 2010   (final data collection date for primary outcome measure)
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Complete list of historical versions of study NCT00052143 on Archive Site
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Prospective Huntington At Risk Observational Study
Prospective Huntington At Risk Observational Study (PHAROS)

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.

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.

Observational Model: Cohort
Time Perspective: Prospective
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Retention:   Samples With DNA

Blood sample

Non-Probability Sample

HD Community

Huntington Disease
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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.

*   Includes publications given by the data provider as well as publications identified by Identifier (NCT Number) in Medline.
Active, not recruiting
July 2010
July 2010   (final data collection date for primary outcome measure)


  • 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
26 Years to 55 Years
Contact information is only displayed when the study is recruiting subjects
United States,   Canada
Ira Shoulson, MD, Professor of Neurology, University of Rochester
Huntington Study Group
  • National Human Genome Research Institute (NHGRI)
  • National Institute of Neurological Disorders and Stroke (NINDS)
Principal Investigator: Ira Shoulson, M.D. University of Rochester
Huntington Study Group
February 2008

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP