Summary

- Roche/Genentech Community Letter & HDSA Webinar
- More Survey Study Opportunities in the New Year 

Roche/Genentech Community Letter: GENERATION HD2 Study Now Open 

On January 11th, Roche/Genentech shared a community letter stating that the GENERATION HD2 study of tominersen has launched. This is a new clinical trial of tominersen, a spinally delivered huntingtin-lowering drug that was previously tested in the GENERATION HD1 study. This study was unexpectedly terminated in 2021 for reasons of safety and efficacy. However, based on data that younger GENERATION HD1 participants who began the trial with less advanced symptoms may have benefitted from tominersen, development of the drug will continue. This new (Phase 2) trial is focused on individuals age 25-50 with early, subtle signs of HD. It will recruit 360 people across 15 countries, including the USA. 

Note that specific site locations have not yet been announced. As different sites receive approvals, they will be posted on clinical trial directories, including HDSA’s HD Trialfinder, which lists currently recruiting studies in the US and Canada.   

The community letter also provided a Q&A related to the study, and reconfirmed Roche’s commitment to researching HD treatments, sharing data from the community, and incorporating family voices into the drug development process.  

HDSA will host a community webinar in the near future to speak about the study’s launch and address questions; stay tuned for details.  

More Survey Study Opportunities in the New Year 

Students and researchers are looking for HD community input into their approved and HDSA-vetted survey studies. Family input on these topics can help shape different aspects of care and policy around HD, and lending your voice is a great way to get involved in research from home. Here are two new ones, and all active surveys are listed at http://www.hdsa.org/surveys

Survey on Digital Data Collection 

Regeneron Pharmaceuticals is conducting a survey about the use of digital data collection technology during clinical trials, such as on a home computer, device, or phone. Their goal is to incorporate input from people with HD and other diseases to understand their comfort level with this type of data collection, and improve participants’ experience during clinical trials. This survey is open to people with HD, their partners, and those who care for them. Please click here to participate. You will be taken to a consent form which will lead to the survey. 

Speech and Swallowing Survey and Free Consultation 

A team at Grand Valley State University (Michigan) is investigating the speech, language, swallowing, and quality of life changes in individuals in early stages of Huntington’s disease (HD). They also intend to bring community awareness to communication and swallowing difficulties associated with HD, and provide preventative care as a part of graduate speech-language pathology program education. If you or your partner has HD and are interested in participating, please click here to access the anonymous survey. If you have any questions, please contact Emily at stockmae@mail.gvsu.edu or Dr. Sri Nandamudi at voice.swallow@gvsu.edu.  

Additionally, if you are interested in receiving a FREE speech and swallowing in-person or virtual consultation from the voice and swallowing lab at Grand Valley State University, Grand Rapids, Michigan, please provide your email address or phone number here to connect with us. For questions, email us at voice.swallow@gvsu.edu