Purpose/Goals of the Study
You are being asked to participate in a research study named “Enroll-HD”. The purpose of this research study is to collect clinical information about you and your health. We will also collect biological samples, such as blood and DNA (the genetic material in your blood). Researchers will use this information and samples to learn more about HD and to try to find new treatments for the disease. People from many countries contribute to Enroll-HD. Because of the size of the study we hope to get answers to many research questions faster than in the past.
What do I have to do?
Enroll-HD has several parts, five of which are core parts of the research study and others which are optional. If
you consent to participate in Enroll-HD we will:
- Assign/confirm a 9-digit unique identifier (HDID).
- Conduct a clinical evaluation of your current medical status and well-being.
- Collect a sample of your blood to study your DNA.
- If you participated in the COHORT study, include any data and samples collected from you in that study in the database along with the data from the Enroll-HD study.
- Store the data and biological materials we collect from you (including any data and samples from COHORT) in a secured place and make them available for future research.
Who is Eligible?
We plan to include all individuals affected by HD or who come from an HD family who are eligible and willing to participate in Enroll-HD. You do not need to have had predictive genetic testing for HD to participate in this study. Caregivers/companions of HD-affected individuals are eligible to participate. Children aged 7-17 can participate if they have clinically diagnosed symptoms of HD and a family history of HD and/or a positive genetic test.
What are the potential risks/benefits?
There are no direct benefits to you for participating in the study, however, your responses will help us better understand Huntington’s Disease. This may lead, ultimately, to better clinical services and effective treatments.
You may experience anxiety or psychological discomfort (such as stress or fatigue) while completing the clinical evaluation and family history questions. You do not have to answer any question you don’t want to answer. If at any time you feel you could benefit from treatment or support, you may request to be referred for appropriate care.
During the collection of blood samples you may experience pain and bruising at the site where blood is taken.