PHAROS

Prospective Huntington At Risk Observational Study

PHAROS aims to define the natural history and experiences of people who are at risk of developing HD and who do not know their gene status. The HSG research sites recruited 1,001 individuals.

The PHAROS project is an observational study in North America (US and Canada) of people ages 26-55 who are at risk for Huntington's Disease and have never been tested for the HD gene. During the study, subjects will be evaluated every nine (9) months (for a minimum of 5 years) using a clinical survey known as the Unified Huntington's Disease Rating Scale (UHDRS),which looks at movement, psychological and behavioral function.

A blood sample will also be taken at the beginning of the study, and will be confidentially tested to determine if the participant has the gene for HD. Neither the participant nor any of the physicians or coordinators of PHAROS will ever learn the results of individual gene tests.

Enrollment is closed.