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 is an inherited (genetic) disease characterized by changes in movement, thought and judgment that usually begin in adulthood. Participants in this study are people who are considered "at risk" for developing HD because they have had a parent or sibling with the disease. To be eligible, a person must not be showing any signs of having the disease. This is an observational study. This means that research participants in this study will be examined periodically, but you will receive no investigational drugs or treatments. All participants in the study will complete the same procedures. These include assessments of health, well-being, mood, and beliefs. Most assessments are done using questionnaires. A blood sample will be taken to determine whether each participant carries the gene for HD, but this will be kept entirely confidential. Neither the researchers nor the participants will know the results. This study will give us important information for future trials of investigational drugs. Little research has been done in individuals who are at risk for developing an inherited disease (like the son, daughter or sibling of a person with HD). Before we can test investigational drugs in healthy individuals who carry the HD gene, we have to address some important issues involving all persons at risk for HD, whether or not they have inherited the abnormal HD gene. Some questions we hope to answer in PHAROS include: 1) In a group of people who are at risk for HD, how many will develop signs of the illness over a five to seven year period? 2) What are the earliest signs of the illness, and when do they start? 3) How accurate are the evaluations that researchers use in detecting the onset of HD? 4) What factors influence the age at which a person carrying the HD gene develops the illness?