This past Sunday at the plenary meeting of the European Huntington’s Disease Network (EHDN), Roche Pharmaceuticals announced some details about two upcoming clinical trials. This scientific presentation in Vienna was followed by a Community Statement from Roche/Genentech to HD families worldwide that HDSA shared via our website, social media, and email.
In summary, Roche will begin recruiting participants in early 2019 for:
(1) GENERATION-HD1, a large, Phase 3 study to test whether the Roche huntingtin-lowering therapy RG6042 (formerly IONIS-Htt-Rx) can improve or slow the development of HD symptoms, and
(2) a Natural History Study in which people with early symptomatic HD will have their mutant huntingtin levels monitored over time.
The Community Statement from Roche/Genentech provides basic information about eligibility, explains more about the trials, and answers some common questions. Please give it a read! Additionally, HD Buzz published a great article breaking down the news, and HD advocate “Gene Veritas” wrote about it in a blog post.
Members of the Roche/Genentech team will be giving an HDSA Research Webinar next Wednesday, September 26th from 12-1 pm EDT to share more about this news in person and answer questions from the community. Please register to attend: https://zoom.us/webinar/register/WN_UiKn-XLORiCEA408UPHm7g
Important to note is that we do NOT yet have information about the exact sites where these studies will take place. Once this information is available it will appear on www.hdtrialfinder.org.
Also be advised that HDSA and other organizations can provide info about these trials, but we don’t control participation. Decisions about clinical trial participation are nearly always made with the guidance of an expert physician with a research interest or research connection, which is why we encourage people to seek care from an HD specialty clinic such as an HDSA Center of Excellence.
We’re excited to continue sharing information with the community as this story develops – please stay tuned!