COHORT

Cooperative Huntington’s Observational Research Trial (COHORT)

This long-term observational study will initially take place at 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 individuals of any age who have clinically diagnosed features of HD in the setting of a confirmatory family history, adults, 18 years of age and older & older adolescents (15-17 years old) who are at-risk for developing HD and adults, 18 years of age and older that are 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, except for older adolescents, who will only have one study visit before the age of 18. Please refer to the COHORT Participating Site List for sites in your area.

At each visit, individuals participating in COHORT will be required to have a clinical evaluation. All subjects will have blood drawn for genetic testing of the CAG polymorphism and for other genetic changes, which may be important to Huntington’s disease. All subjects will also be given the option to participate in the collection and storage of blood for future HD research. For those who are 18 years of age and older, there will be optional research procedures including the collection of family history, HSG data linking, Analysis of Life Decision Survey (select sites), contact between study visits, and future contact about HD research.

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.

To read more about the different aspects of the COHORT study, click the appropriate link:
Clinical Evaluation
Collection of Blood for Genetic Testing
Collection of Family History Information
Collection and Storage of Biological Samples for Future HD Research

Clinical Evaluation

Each year COHORT participants will undergo a medical and neurological evaluation. This evaluation will include standardized assessments of movement, thinking, memory, ability to perform daily activities, and behavior. Also, a medical and neurological examination will be conducted and the participant will provide information about medical history and current medications. Older adolescents will only participate in the medical history and the UHDRS 99. These individuals will have one study visit before the age of 18 and will be asked to re-consent as an adult once they reach the age of consent.

Collection of Blood for Genotyping

At the initial visit, all COHORT participants will have blood drawn for genotyping of the CAG polymorphism and for other genetic changes, which may be important to Huntington’s disease. Since this genotyping will be experimental, neither the COHORT participants nor the site investigators will receive the results.

Collection of Family History Information (optional)

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. Any COHORT participant 18 years of age and older with a family history of HD will be asked to participate. This part of the COHORT study is optional. If the participant chooses not to provide family history information, he or she may still take part in the COHORT study.

The participant will be asked to complete a Family History Questionnaire (FHQ), which asks questions about the participant’s extended family, including:
• Family members’ names, birthdates, sex, and, if applicable, date of death
• For any affected family members, age of HD diagnosis and whether a physician made the diagnosis will be collected.

Collection and Storage of Biological Samples for Future HD Research (optional)

Scientists have found that blood, urine, and other biological samples contain clues about HD that may be used to better understand the progression of the disease and to develop new therapies. Any COHORT participant will be given the option of having blood and urine collected and stored for future HD research. If a participant chooses not to participate, he or she may still take part in the COHORT study. These samples will be labeled with a unique identification code and stored in a research facility.

These stored samples will provide researchers with the resources necessary to study Huntington’s disease. Huntington’s disease researchers from institutions all over the world will be able to request samples for research in HD. All samples will be identified with a code, and researchers will not receive any personally identifying information about COHORT participants.

last updated: February 2010