Blogger and HD advocate “Gene Veritas” shared a post this week about gene editing and an upcoming gene therapy symposium where he will speak alongside leading scientists and biotech executives to share the challenges faced by families with Huntington’s disease. It’s exciting to hear that industry leaders are paying closer attention, exploring HD research, and inviting input from affected individuals. 

Participating in HD Research

Summer is coming to an end, and we are gearing up to evaluate HDSA Human Biology Project applications, attend conferences, provide research updates at educational events, and hear about the next steps for upcoming gene therapy clinical trials. This is a great time to talk about the ways that folks can get involved in HD research – patient and family participation is the most important ingredient for moving science forward.

That’s why HDSA created HD Trialfinder, where we keep a comprehensive listing of Huntington’s disease clinical trials that are recruiting in the United States. HD Trialfinder is designed to list ONLY those studies that are currently looking for participants. We keep in close contact with academic and industry research to keep the site up to date, so if you haven’t matched to a trial lately, check it out. You can browse on your own, fill out a profile for yourself or someone else, or give our clinical trial navigators a call.

It’s not just large drug studies that are looking for participants. There are many small local sites conducting research studies that inform our understanding of HD, test new interventions, or see how existing medications could benefit someone with HD. Examples include exercise training, wearable technologies to track movements, and identifying which gut bacteria are harmful or helpful.

Observational studies and sample donation initiatives like Enroll-HD and HD Clarity are also helping to push HD research forward. Huge sets of data and samples from thousands of participants attract pharmaceutical companies to study HD, and sites with many participants engaged in observational research are often selected for the next big drug study.

Participating in research surveys, being a study companion, and simply spreading accurate information about what’s going on in HD research are also excellent ways to join the fight.

Thanks for staying engaged with HDSA’s research blog, and enjoy your Labor Day weekend!