Clinical studies can include experimental treatments, such as drug trials, and observational studies. Studies are often conducted under the auspices of the Huntington Study Group or may be sponsored by pharmaceutical and biotechnology companies or the National Institute of Health. The Center also conducts a number of trials on its own.
Currently Enrolling Studies
HDClarity: A Multi-Site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease
The main purpose of this observational study is to collect cerebrospinal fluid (CSF), the fluid that surrounds the brain and spinal cord, which is needed to study biomarkers to see which biomarkers influence HD’s pathophysiology and progression, as well as how biomarkers differ between HD and non-HD participants. CSF can be used to provide information about the brain and the nervous system that is impossible to obtain in any other way. CSF is collected by a procedure called a lumbar puncture or spinal tap. This is a commonly performed procedure that takes around 30 minutes. Family members with a positive or negative HD status, or family not related through blood (i.e. spouses and partners) may participate. In addition, biomarkers may help design and guide future research studies and clinical trials as well as help us better understand who will most likely benefit from a particular treatment.
Enroll-HD: A Prospective Registry Study in a Global Huntington Disease (HD) Cohort
Enroll-HD is a multi-site clinical observational study that assess its participants on an annual basis. There are over 13,000 active participants worldwide, at 148 sites in 15 countries. Types of assessments used includes cognitive, behavioral, motor, and physiological, as well as demographic information and HD family history. You will also have a blood draw. Both people with and without HD can participate – this includes pre-symptomatic and symptomatic patients, those with unknown HD status, and family members. Furthermore, this study leads as a platform for future HD clinical research.
For research information, please contact:
Jacqueline V. Bran, M.A., M.H.S.
Research Program Coordinator