PROSPECTIVE HUNTINGTON AT-RISK OBSERVATIONAL STUDY (PHAROS)

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This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Huntington's disease (HD) is an adult-onset, progressively disabling and lethal neurodegenerative disorder. While the primary gene defect has been established and knowledge has been amassed about manifest HD, relatively little is know about the individuals who are at genetic risk for HD and their signs, symptoms, experiences and attitudes. The Prospective Huntington At Risk Observational Study (PHAROS) was initiated by the Huntington Study Group in 1999 to characterize and measure the clinical onset of HD in a diverse cohort of individuals who are at immediate risk for having inherited the HD gene. PHAROS participants include healthy adults, age 30-55 years, who have not undergone testing for the HD gene and who wish to remain unaware of their HD gene status, yet desire to contribute to knowledge about HD by participating in research. Under a stringent arrangement that conceals genetic information and protects confidentiality, a blood sample is obtained from each research participant to measure cytosine-adenine-guanine trinucleotide repeat (CAGn) of the HD gene.