The Huntington Study Group is a clinical research network focused exclusively on Huntington disease. Each year they host a conference that provides education and training for HD clinicians and researchers, with a final day reserved for families and the wider HD community. Their virtual event, HD in Focus is taking place now, with scientific talks this Thursday and Friday October 29th and 30th, followed by a family day on Saturday October 31st. You can learn more, view the program, and register to attend at https://huntingtonstudygroup.org/hsg-2020/.
Research sessions will include (scientific) presentations from the major companies running HD clinical trials, such as Roche and Wave, as well as pharmaceutical innovators like Triplet Therapeutics, mentioned below. Upcoming trials from Sage, Azevan, and Novartis will also be discussed. The family day will involve breakout talk sessions, an Ask the Experts panel, and a “research blitz” from a variety of companies.
Gene Veritas on Triplet Therapeutics
HD advocate, gene positive individual, and writer “Gene Veritas” discusses HD research and care in his long-running blog, At Risk for Huntington’s Disease. He recently wrote a detailed post about the Cambridge, Massachusetts-based company Triplet Therapeutics and the science behind their approach. Triplet aims to develop therapies that stop the expansion of CAG repeats over the course of a person’s lifetime, known as somatic instability. To better understand this phenomenon, they are currently conducting an observational (no drug) trial called SHIELD-HD, which will involve about 60 HD gene carriers who have not yet begun to experience movement symptoms (chorea). Gene’s article provides an in-depth look at the genetic discoveries leading up to the formation of Triplet, the SHIELD-HD trial, and a drug trial planned for 2021. For more on somatic instability and the companies focused on it, check out this recent HDBuzz article.
HDSA and Me: Telehealth
Dr. Erin Furr-Stimming’s recent webinar on the present and future of telemedicine and virtual care for people with Huntington’s disease is now available to view on HDSA’s YouTube channel. Dr. Furr Stimming and her team at the HDSA Center of Excellence at the University of Texas Health Science Center at Houston shared their telemedicine experience during the COVID-19 pandemic and discussed challenges and opportunities for the HD community.
