Here you can read some testimonies of people from the HD community that participated in clinical studies.

If you want to raise your voice about your experience in HD research, please email


"For me, it is extremely important to be able to be involved when an opportunity arises to participate in future research. I want to know what is available and where, also to be able to find the right and good information and I think HDTrialfinder represents that."


“The patient community needs researchers. They look for new ways to develop effective treatments. Researchers also need the patient and rely on their participation to ensure research is meaningful. Patients are not only subjects, but active actors in the discovery of new treatments. With such a changing landscape in the Huntington’s disease research field now is not the time to say: “someone else will do it”. That someone is YOU. We are the experts. The ones living or caring for someone with Huntington’s. We all have a part, no matter how small, to play in research. “​


"Taking part in HD research is important for the obvious reason that the more research we participate in essentially the closer we get to an effective treatment. But the reality of taking part in clinical trials is that it’s a challenging process on many fronts and everyone should think carefully if this study feels right for them. Those who take part are really brave individuals and I think so far we see how many brave people we have in our community. For this we are lucky."


"HD families are vital to the advancement of HD research - it goes nowhere without the participation of and collaboration with the HD community. We are the key to the eventual cure and treatment of HD."


"If you see an opportunity to participate in research, being a questionnaire, donating blood, speaking out to people, please do so. That helps the community forward, it drives research, it makes sure that we have the developments that we have. So, anybody that wants to do something in research, go ahead, do it, it's worth it, for sure!"