- SERVICE 02 — CLINICAL TRIAL CONNECTION
Huntington’s Disease Clinical Trials Connection at No Cost
100% Free
Always. No fees, ever.
All HD Families
Gene-positive, negative, at-risk.
HSG Partnership
Powered by the Huntington Study Group.
- THE PROCESS AT A GLANCE
How We Connect You to HD Clinical Trials
Fill Out an Intake Form
Share some basic information about yourself, your situation, and your interests in HD research.
Have a Call With Our Team
B.J. and our team will learn more about you, answer your questions, and understand what matters most to you.
Get Connected to Trial Coordinators
We connect you directly with clinical trial coordinators based on your interests, eligibility, and location.
Huntington’s Disease Clinical Trials Connection Designed Around You
- YOUR TRIAL CONNECTION LEAD
B.J. Viau (View) — Personally Guiding You Through HD Research
B.J. founded HD Genetics from a place of lived experience — and that same experience guides every Clinical Trial Connection conversation. Since his mother’s diagnosis with HD in 1995, B.J. has spent three decades inside the HD community, including 15+ years working in the pharmaceutical industry where he played a role in the launch of the first FDA-approved medicine for Huntington’s chorea.
What makes B.J. uniquely positioned to help connect you to research is that he has personally participated in multiple HD studies himself — including PREDICT-HD, PREVENT-HD, ENROLL-HD, and HD Clarity. He understands what enrollment feels like from the participant’s side: the questions you’ll have, the time commitment involved, the emotional considerations, and what to expect at study sites.
B.J. also serves as a trusted bridge between HD families and the pharma and biotech companies actively working on treatments — relationships built through his role at PatientViau and his decade of leadership on the HDYO Board. When you talk with B.J., you’re getting a participant’s perspective combined with deep knowledge of every company currently running HD trials.
Everything That's Included in Your Trial Connection
Initial Consultation
A free, no-pressure conversation to understand your situation, your goals, and your comfort level with research participation.
HD Research Education
Plain-language walkthrough of the current HD research landscape — clinical trials, observational studies, and what each one involves.
Personalized Trial Matching
We identify studies that may be a fit based on your location, health history, gene status, and personal preferences.
Direct Site Introductions
We connect you directly with research teams at study sites — no cold calls, no lost referrals, no navigating the system alone.
Ongoing Updates & Outreach
We will do the work to stay up to date on HD trials and reach out to you when new opportunities arise, so you can focus on living your life without worrying about missing an opportunity.
- WHAT MAKES US EXPERTS
The Three Things HD Genetics Knows Better Than Anyone
We Know What's Enrolling — Right Now
The HD clinical trial landscape changes constantly. Pharma and biotech companies open new studies, close enrollment, and shift recruitment criteria month to month. Through our partnership with the Huntington Study Group (HSG) and our direct relationships with sponsors, we know what's actively recruiting today, what's coming next month — and where, because the hardest part is sometimes finding the exact location.
We Know the Qualifications That Actually Matter
Every HD study has its own eligibility criteria — gene status, age, symptom stage, prior treatment history, geographic location, and more. We help you understand which trials you may qualify for before you spend hours filling out screening forms, so your time goes toward studies that are realistic possibilities.
We Have Real Relationships With Study Sites
HD Genetics works directly with clinical trial sites and coordinators across the country. When you're ready to explore a study, we don't hand you a website link — we make an introduction. That means faster responses, clearer next steps, and a personal connection from day one.
- A LANDMARK YEAR FOR HD RESEARCH
2026 — The Most Active Year in HD Research History
For decades, families affected by Huntington’s disease have waited for breakthroughs. In 2026, as many as five pharmaceutical and biotech companies are actively enrolling participants in HD clinical trials across the United States and Canada — alongside dozens of observational studies tracking the natural history of the disease.
Every participant — whether gene-positive, gene-negative, or at-risk — contributes to research that could change the future for the entire HD community. Our role is to help you understand what’s available and connect you with the studies that fit your life.
Understanding HD can make the clinical trial search process easier to navigate. HD Genetics provides HD education and Huntington’s disease resources for individuals, families, and caregivers who want clearer information about symptoms, inheritance, genetic risk, testing, counseling, and clinical research.
What's Currently Enrolling Includes:
- Disease-modifying therapy trials
- Observational and natural history studies
- Biomarker and early-detection research
- Studies for pre-symptomatic gene carriers
- Studies for gene-negative family members
- Symptom management clinical trials
How HD Clinical Trial Connection Works
1. Fill Out the Intake Form
A short questionnaire to tell us a bit about your situation — gene status (if known), location, and your interests in HD research. Takes about 5 minutes.
2. Schedule a Call With Our Team
After your intake form, our team reaches out to find a time that works for you. You'll book a virtual phone or video conversation with our Genetics Team — no commitment, no cost.
3. Have a Conversation With HD Genetics
Meet virtually with B.J. Viau (View), our Founder and HD research expert
4. Get Customized Trial Connections
Based on your interests, location, and qualifications, we provide personalized connections to clinical and observational studies that may be a fit. Drawing on our partnership with the Huntington Study Group (HSG), we identify what's currently enrolling and what's coming soon.
5. Stay Connected as New Trials Emerge
HD Genetics is focused on helping people make informed decisions about Huntington’s disease testing, counseling, education, and research participation. To learn more about the organization’s mission and why this work matters, visit About HD Genetics.
Understanding the Types of HD Studies
Disease-Modifying Therapy
Clinical trials testing whether new treatments can slow, halt, or reverse HD progression. Involve regular visits, monitoring, and sometimes a placebo group.
Natural History Tracking
No medication, no intervention. Researchers track how HD develops over time. Often the easiest way to contribute — sometimes just an annual visit or questionnaire.
Early Detection Studies
Researchers collect samples (blood, saliva, imaging) to identify biological markers that signal HD progression — often before symptoms appear.
Symptom-Focused Treatment Studies
Clinical trials testing therapies designed to manage specific HD symptoms — such as chorea, mood changes, or cognitive challenges. Often involve participants who are already experiencing symptoms.
Is HD Clinical Trial Connection Right for You?
You're a Good Fit If:
- You're part of an HD family — gene-positive, gene-negative, at-risk, or related
- You're 18 years of age or older
- You're living in the United States or Canada
- You're curious about HD research — even if you're not sure you want to participate
A Few Notes:
Why This Service Is Always Free
Funded by Mission, Not Fees
HD Genetics created this service because every person in an HD family deserves access to current research opportunities — regardless of their financial situation. Those who want to support expanded access for HD families can donate to HD Genetics and help advance the organization’s mission.
Powered by HSG Partnership
Our partnership with the Huntington Study Group gives us direct access to up-to-date study information, so we can connect you efficiently without intermediaries.
No Insurance, No Strings
We never bill insurance for this service, and there's no requirement to enroll in any study after our conversations. You're free to walk away at any point.
HD Clinical Trial FAQs: What to Know Before You Connect
Most clinical studies require you to have undergone genetic testing to participate. That said, there are some observational studies that specifically look for gene-negative or at-risk individuals to take part. During your consultation, B.J. will walk you through what's currently enrolling and which studies, if any, may be a fit for your situation.
That depends on the specific study and how you choose to engage. Some research is conducted entirely outside of clinical care systems, while others integrate with your existing medical team. Our team can help guide you on this before anything would go on your record. During our consultation, we'll discuss your privacy preferences and help you understand the implications of each study before you commit to anything.
Every research study is conducted at a varying number of research clinics, so it's very dependent from study to study. Almost all clinical studies have budgets to cover the cost of travel to trial sites. Speak with our team to learn more about the travel involved for each study, and we'll help you identify the options that work best for your location.