This site became the new on June 19th. Learn more.
Show more Menu IMPORTANT: Listing of a study on this site does not reflect endorsement by the National Institutes of Health. Talk with a trusted healthcare professional before volunteering for a study. Read more... Menu IMPORTANT: Talk with a trusted healthcare professional before volunteering for a study. Read more... Menu
Give us feedback

Prospective Huntington At Risk Observational Study (PHAROS)

The recruitment status of this study is unknown. The completion date has passed and the status has not been verified in more than two years.
Verified February 2008 by Huntington Study Group.
Recruitment status was:  Active, not recruiting
National Human Genome Research Institute (NHGRI)
National Institute of Neurological Disorders and Stroke (NINDS)
Information provided by:
Huntington Study Group Identifier:
First received: January 23, 2003
Last updated: April 15, 2009
Last verified: February 2008
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 Disease

Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Official Title: Prospective Huntington At Risk Observational Study (PHAROS)

Resource links provided by NLM:

Further study details as provided by Huntington Study Group:

Biospecimen Retention:   Samples With DNA
Blood sample

Enrollment: 1001
Study Start Date: July 1999
Estimated Study Completion Date: July 2010
Estimated Primary Completion Date: July 2010 (Final data collection date for primary outcome measure)
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.


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
  Contacts and Locations
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, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT00052143

  Show 42 Study Locations
Sponsors and Collaborators
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
  More Information

Additional Information:
Publications automatically indexed to this study by Identifier (NCT Number):
Responsible Party: Ira Shoulson, MD, Professor of Neurology, University of Rochester Identifier: NCT00052143     History of Changes
Other Study ID Numbers: R01HG002449 ( U.S. NIH Grant/Contract )
Study First Received: January 23, 2003
Last Updated: April 15, 2009

Keywords provided by Huntington Study Group:
Huntington's disease
Huntington disease

Additional relevant MeSH terms:
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 processed this record on September 19, 2017