Taking part in Enroll-HD
Taking Part in Enroll-HD
Welcome, and thank you for your interest in Enroll-HD! The success of the study depends on volunteers like you around the world who become a part of HD research.
Enroll-HD is actively recruiting participants in Europe, North America, Latin America, and Australasia. Visit the study sites page to find a clinic near you.
Data Points Collected
Taking part in Enroll-HD
If you decide that you want to join Enroll-HD, you’ll make an appointment to visit your local study site. Your Enroll-HD study visits will be a little bit like a regular visit to an HD clinic, but different in some important ways. The main difference is that instead of being a patient you’re now a study participant, which means that you are providing information rather than getting counseled about your health.
The time your visits take will differ slightly depending on your local site. Your first visit may take between 1½ and 2½ hours, and follow-up visits may be less than an hour or up to two hours. At some larger sites that also provide regular medical care for HD, it may be possible to schedule your regular clinic visit and your Enroll-HD visit for the same day.
At each study visit, you’ll meet with a neurologist or other healthcare professional to answer questions and complete a series of evaluations. The types of information collected are described below.
While completing these evaluations you’re officially a research participant rather than a patient. The people working with you are now in the role of researcher, even if they are normally one of your healthcare providers. That means that during this visit they won’t tell you how well you do on the evaluations, or give you advice regarding your health.
Before you can get started in the study, you will need to read and sign an informed consent form- you can learn more about informed consent here. At your first site visit, you will talk over the informed consent form with the site coordinator or study nurse, who can answer all your questions.
While protecting the privacy of study participants is paramount, Enroll-HD clinical data collected from participants is made available to verified researchers and scientists all over the world so we can understand more about how HD happens in people and investigate new ideas for effective treatments. You can read more about how your privacy is protected here.
What happens at each visit?
At each study visit, you’ll meet with a doctor or a trained site staff member to answer questions and complete a series of evaluations. The types of information collected are described below. Some components are optional and will only be completed if you decide to do so (e.g., describing your family history with HD).
Taking part: FAQs
Frequently asked questions and answers relating to taking part in Enroll-HD.