The Huntington Study Group (HSG) led by Dr. Ira Shoulson at the University of Rochester is conducting the PHAROS study. This study is funded by the National Human Genome research Institute (NHGRI) and the National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health. The purpose of the study is to define the natural history of people who are at risk of developing Huntington disease and who do not know their gene status. PHAROS is an observational study of individuals ages 26-55 who are at risk for HD and have never been tested for the HD gene. Subjects are evaluated for a minimum of 3 years with an emphasis on the evaluation of the movement, psychological and behavioral function of individuals at risk of developing HD.

1. The PHAROS study hopes to answer the following questions:
2. What are the earliest signs of HD and when do they start
3. How accurate are the measures that physicians use in detecting the onset of HD
4. What factors influence the age at which a person carrying the HD gene develops the illness, and
5. In a group of people at risk for HD, how many will develop signs of the illness over a minimum 3-year period of observation?

Publications resulting from this study:

1. Hogarth P, Kayson E, Kieburtz K, Marder K, Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H, the US-Venezuela Huntington’s Disease Collaborative Research Group; and the Huntington Study Group. Inter-Rater Agreement in the Assessment of the Motor Manifestations of Huntington’s Disease. Mov Disord in press.