COHORT, an observational study
COHORT, the cooperative Huntington's observational research trial, is a long-term observational study to collect information in order to learn more about HD, potential treatments, and to plan future research studies of experimental drugs aimed at postponing onset or slowing the progression of HD. This study will include 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 for the Huntington's gene as well as for other genetic differences which may be important for the disease.
Data from the COHORT study will be collected 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. Participants will undergo annual medical and neurological evaluations, which will include standardized assessments of movement, thinking, memory, ability to perform daily activities, and behavior. The collection of participants' family history data will be used to learn more about the natural history of the disease over several generations. This information may uncover new details about why there are differences in how HD affects different families and different members within a family. Biomarkers may be discovered and validated which can be used in place of the current clinical assessment measures to shorten clinical trials.
Links for more information
eligibility and other information about the trial:
Clinicaltrials.gov information
about participating sites and contact people:
Huntington Study Group list of participating sites