Official HD Genetics Partner StudyEnroll-HD: The World's Largest HD Research Study
If you're between 18 and 40 and connected to Huntington's disease — gene-positive, gene-negative, or at-risk — Enroll-HD is one of the most important things you can do for the HD community. HD Genetics is an official partner and can connect you to a site near you.
HD Genetics is an official Enroll-HD partner
We work directly with Enroll-HD study sites across the country to help families find their nearest clinic and get enrolled. Our service is completely free.
What is Enroll-HD?
The backbone of HD research worldwide
Enroll-HD is a global observational study run by the CHDI Foundation — the world's largest HD research organization. It is the single most important long-term dataset driving every major HD clinical trial today.
Unlike drug trials, Enroll-HD involves no experimental medication and no placebo. Participants simply visit a study site once a year for a clinical assessment — cognitive tests, motor evaluations, and a blood draw. That's it.
The data collected fuels drug development, helps researchers understand how HD progresses, and makes it possible to design better trials. Every person who enrolls makes the next breakthrough more likely.
Learn more at enroll-hd.org
×Enroll-HD- No experimental drugs or placebo
- One annual visit (~2–3 hours)
- 30+ study sites across the USA
- Open to gene-positive, negative & at-risk
- Completely free to participate
- Your data powers every major HD trial
Why ages 18–40 matter most
Young adults are the most underrepresented — and most needed
Enroll-HD has a strong emphasis on enrolling individuals aged 18–40. Researchers need data from younger gene-positive and at-risk individuals to understand early HD progression — before symptoms appear. This age group is critically underrepresented in the study, and your participation could directly shape the next generation of HD treatments.
Who can participate
Open to the entire HD family
Gene-positive individuals
Anyone who has tested positive for the HD gene expansion, at any stage of the disease.
At-risk individuals
People who have a parent with HD but have not yet been tested — or who have chosen not to test.
Gene-negative family members
Siblings, children, or partners who tested negative. Your data as a control participant is equally valuable.
Manifest HD patients
Individuals already showing HD symptoms. All stages of manifest HD are welcome.
What to expect
One visit a year. That's it.
Connect with HD Genetics
Reach out to us — free, anonymous, and no obligation. We'll identify the Enroll-HD site closest to you and make the introduction.
Contact your local site
The study site team will walk you through the consent process and schedule your first visit at a time that works for you.
Annual visit (~2–3 hours)
Once a year you'll visit the clinic for cognitive and motor assessments and a blood draw. No overnight stays, no experimental drugs.
Contribute for years to come
Your longitudinal data becomes part of the world's most important HD dataset — powering trials for decades.
Also enrolled in Enroll-HD? You may qualify for HD CLARITY
HD CLARITY is an add-on study available at select Enroll-HD sites that collects cerebrospinal fluid (CSF) samples to study HD biomarkers. Travel expenses are covered. Ask us about eligibility when you reach out.
Ready to enroll? HD Genetics will find your nearest site.
We know every Enroll-HD site in the country. Tell us your zip code and we'll point you to the right clinic — completely free, no strings attached.