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 now accepting participants in Argentina, Australia, Canada, Chile, Denmark, Germany, Ireland, Italy, the Netherlands, New Zealand, Poland, the United Kingdom, and the United States. Click on the map to find a site near you, then get in touch with your local site coordinator. Study sites are being added all the time, particularly in Europe, so if you don’t see a site accepting participants now, come back again later.
To learn more about getting involved, see the FAQ.
Why should I participate?
- You’ll become part of a worldwide effort to help find effective treatments for HD.
- You’ll be in position to learn about upcoming clinical trials.
- You can make a difference in HD research.
Who can participate?
Any member of a family affected by HD can take part, including:
- People who know they carry the expanded gene, whether or not they have any symptoms related to HD or have officially been diagnosed with it.
- People who haven’t been tested to find out whether they carry the HD gene, but may be at risk based on family history. Even if you don’t want to know your gene status, you can still be part of Enroll-HD—you don’t have to find out.
- People who have a family history of HD but know they do not carry the expanded gene
- Spouses and partners (not blood relations) of people with a family history of HD
Children under the age of 18 with clinically diagnosed juvenile HD may participate with the consent of a parent or legal guardian.
How long will the study last?
Enroll-HD is an open-ended study, which means it has no end date. The longer you stay with it, the more valuable your contribution will be, but you can leave the study at any time you choose.
What happens during study visits?
The study requires one visit each year. You’ll be tested on your physical function, emotional state and cognition, mostly with simple paper-and-pencil questionnaires and puzzles. The study team will ask you questions to help evaluate your quality of life. If you wish, you can choose to donate a small amount of blood at each visit to help the study team.
Read more about what to expect on your first study visit.
What safeguards are in place for study participants?
To protect your privacy, your name, address, phone number and other information that identifies you will not be shared with anyone besides the study coordinators at your local site. The data and samples collected as part of the study will be coded, which means they will be linked only to a number, not your name.
Before you officially join the study you’ll read documents that explain all the facts about the study and what it involves, and discuss them with the study staff—a process called informed consent. If you decide to participate, you will sign the informed consent document indicating that you know what the study is about and how it works. You can leave the study at any time, for any reason at all. You may be asked to undergo a final safety assessment before ending your participation.
We encourage you to talk with your family before participating in this, or any other, study. You may want family members to accompany you to study visits or provide other assistance. Getting their support in advance may be essential.
What happens to my data?
Enroll-HD will make data available to scientists all over the world so that we can get as many researchers as possible working on HD and accelerate the pace of research. This will be done while ensuring the privacy of study participants is protected through a process of double re-coding. All data collected as part of the study are maintained separately from your own medical records. Your name is not entered into the Enroll-HD database. Instead, your data is associated with a 9-digit code, the HDID. Then, before any of this information is made available to research scientists, it is assigned a new ID number separate from the HDID. This way, data can be shared widely but people’s identities are still concealed. Click here for more details.
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