Pharos Study
What is the PHAROS Study?
In July 1999, The Huntington Study Group (HSG) launched the first of its at-risk studies, PHAROS or Prospective Huntington At Risk Observational Study.
The Pharos Project is an observational study in US & Canada of people ages 30-54 who are at risk for Huntington’s Disease. During the study subjects will be evaluated every nine months, for a period of 3 years, using a clinical survey known as the Unified Huntington’s Disease Rating Scale (UHDRS).
Why is the HSG observing people at risk for Huntington’s Disease?
To date little research has been done on individuals who are at risk for developing an inherited disease (such as the children of a person with HD). The HSG is hoping to answer some important questions, including:
- What are the earliest signs of HD and when do they start?
- How accurate are the measures that physicians use in detecting the onset of HD?
- What factors influence the age at which a person carrying the HD gene develops the illness?
- In a group of people at risk for HD, how many will develop signs of the illness over a three year period of observation?
How to participate – Eligibility
If you are interested in participating, the PHAROS study is currently enrolling “at risk” research subjects at 41 HSG sites in the US and Canada. To be eligible for participation, subjects must be between the ages of 30-54 years, have no signs of HD and have never been tested for the HD gene.
Contacts
To learn more about PHAROS and the participating HSG site nearest you please contact the HSG at their toll free number: 1-800-487-7671. Or the HSG website at: www.Huntington-Study-Group.org