Any adult member of a family affected by HD can take part, including: 

• People who know they have the HD gene expansion, regardless of whether they have signs/symptoms or have been diagnosed with HD 

• People who know they are ‘at risk’ but haven not taken the genetic test to establish whether or not they carry the expanded HD gene 

• People with a family history of HD but know they do not carry the expanded gene 

• Spouses/partners (not blood relatives) of people with HD

Children under the age of 18 with a diagnosis of juvenile HD can participate in Enroll-HD with the consent of a parent or legal guardian. 

Now that Enroll-HD has been running for many years we will increasingly seek to recruit individuals who can help support the future evaluation of new drugs in clinical trial; this includes people who are in the early stages of their disease, people that have the expanded gene but do not yet have signs/symptoms, and at-risk people who do not know their gene status.

The first visit is the longest one, lasting between 1½ to 2½ hours. Each visit after that will usually be 45 minutes to 1 hour, but some sites may add components that can make visits last up to 2 hours - you can ask the study nurse or site coordinator for more details.

Enroll-HD doesn’t have an end date. You’ll be asked to come back to the clinic for a return visit once a year. You can leave the study at any time, but the longer you participate the more valuable your data are to researchers. 

No. If you’re from an HD family and at risk but you haven’t been tested, you can volunteer for Enroll-HD without knowing your genetic status. At your first visit, a blood sample will be taken to check the number of CAG repeats in your huntingtin gene. This happens for every Enroll-HD participant, whether they know their gene status or not. The result of this test is used for research purposes only, and will not be reported back to you, your doctor, or anyone else at the site, nor will it be included in your medical records.

If you later decide that you do want to know your genetic status you can discuss predictive or diagnostic testing with your study site staff.

Yes. At your first visit, a blood sample will be taken to check the number of CAG repeats in your huntingtin gene. This happens for every participant, whether they know their gene status or not. The result of this test is used for research purposes only, and will not be reported back to you, your doctor, or anyone else at the site, nor will it be included in your medical records.

This next part is optional. If you agreed to do so when completing your informed consent form, you will be asked to provide additional blood samples at each study visit for research biobanking. Note that these blood samples are collected in addition to the mandatory blood sample that is collected at your first visit and used for CAG genotyping. Biological samples are an essential tool to answer crucial questions about HD. For example, genetic information beyond just the HD gene might explain why the disease is so different in different people.

Enroll-HD is referred to as a clinical research platform, meaning that it is designed to make all other HD research faster, smarter and more efficient. It does that by: 

• Collecting standardized data over a long period of time, in the same way and using the same methods, from tens of thousands of people all around the world.

• Making data available to any verified scientist who wants to better understand HD in their research project. We want as many scientists as possible all around the world working on HD.

• Developing a comprehensive database of people who may be interested in volunteering for future studies, including drug trials, with all the necessary information about them already in place.

Enroll-HD is also a way of getting pharmaceutical and biotech companies interested in HD. When they see that lots of research is going on at an accelerated pace and HD families are eager to get involved in research, they will be more likely to view HD as a disease that gives them a good chance of developing new effective treatments. Enroll-HD aims to get as many researchers as possible all around the world working on HD, whether they are in universities or companies. 

The Enroll! newsletter comes out digitally at least once a year. It includes the latest news on the study, as well as updates, profiles, and interviews with the people behind the scenes who make Enroll-HD possible.

Enroll-HD is funded by CHDI Foundation, a nonprofit biomedical research organization exclusively dedicated to rapidly and collaboratively developing therapeutics that will substantially improve the lives of individuals affected by Huntington’s disease. You can find out more here.