HD Trialfinder, FOCUS-HD, & Young HD Investigators

HD Trialfinder: Sign up or Re-Match Today!  

If you’re interested in participating in HD research, HDTrialfinder is a great place to start. These clinical trials matching platform run by HDSA helps users discover which actively recruiting HD research studies they may be eligible for and includes drug studies, biomarker and imaging studies, quality of life studies, and registries.  

What you may not know about HD Trialfinder is that it can also be a tool to receive updates about studies whose inclusion criteria match your profile. By consenting to receive communications from study sponsors, you can learn about studies for which you may be eligible as they arise. This does not mean you are signing up for direct outreach from HDSA or monthly newsletters from researchers and pharmaceutical companies. HDSA works with a company called CareBox to make sure any information shared with HDTrialfinder is completely confidential. Study sponsors who request direct outreach have the option to send an email to individuals whose profiles match the inclusion criteria of their study and who have consented to outreach. This email goes out via CareBox, meaning neither study sponsors nor HDSA can access names or contact information of prospective participants. Make an account here to get started or check the settings of your existing Trialfinder account to consent to future outreach.  

FOCUS-HD: How does HD impact functional abilities?  

HD symptoms can present in a variety of ways, and one of the earliest signs of HD onset can be changes in functional abilities like motor skills and capacity to manage day to day tasks. CHDI Foundation, Inc., is conducting an online study to evaluate the Functional Rating Scale 2.0 (FuRST 2.0). The FuRST 2.0 is a new measure that is being developed to improve the assessment of Huntington’s disease’s (HD) impact on people’s functional abilities. Any person who is 18 years of age or older and self-identifies as having HD (e.g., gene positive pre- or post-clinical motor diagnosis) is invited to participate. The study involves responding to the FuRST 2.0 and two other short questionnaires. The study will take approximately 20 minutes to complete. No compensation is provided for participation. If you are interested in participating, please click here. If you have any questions about this study, please contact FOCUSOnlineStudy@chdifoundation.org. To learn more, you can visit HDSA’s online surveys page, or tune in to Help4HD’s recent podcast interview with CHDI’s Director of Outcomes Research, Matt Roche. 

Help4HD & HDF Young Investigator Series: The Gut & HD  

In collaboration with the Hereditary Disease Foundation, Help4HD podcast highlights distinguished young investigators in HD research and offers them a platform to share their work. In the most recent Young investigator episode, Dr. Carolina Gubert shares her experience studying the gut in HD. To listen to the full episode, click here.