Cooperative Huntington's Observational Research Trial (COHORT)

Description:
Huntington's disease is an inherited disorder that affects about 30,000 people in the United States. In addition about another 150,000 people are at risk for developing the disease. Huntington's disease is caused by a defective gene, which leads to the destruction of brain cells, causing involuntary movements, cognitive problems, and typically psychological problems like depression and paranoia. The disease usually strikes in young to mid-adulthood, individuals are usually in their 30s or 40s. The disease is fatal, and while there are some medications to help alleviate some of the disease symptoms, there is no known cure or medication to help slow the progression.

This long-term observational study will initially take place at 42 North American and Australian Huntington Study Group (HSG) sites. The goal of COHORT is to collect information in order to learn more about HD, potential treatments, and to plan future research studies of experimental drugs aimed at postponing the onset or slowing the progression of HD. This study will recruit both adults and children who have clinically diagnosed HD and adults who are a part of an HD family. Individuals who choose to participate will have one study visit every year for as long as they are able and choose to participate.

At each annual visit, all individuals participating in COHORT will be required to have a clinical evaluation. Those who are 18 years of age and older will have blood drawn for genetic testing of the CAG polymorphism and for other genetic changes, which may be important to Huntington�s disease. For those who are 18 years of age and older, there will be optional research procedures including the collection and storage of blood and urine for future HD research.

This study will collect information in databases designed to protect the privacy of all those who participate. The data and samples will provide researchers with a valuable resource to address a wide variety of research questions in Huntington�s disease.