The Huntington Study Group held their 22nd Annual Meeting and the 9th Annual Clinical Research Symposium October 21−24, in Tampa Bay, FL.
By: George McNally, BMedSc
HSG 2015 provided a platform for the world’s leading HD experts, clinicians, scientists, and the HD community to discuss the most promising and latest innovations in HD research. Chaired by Dr. Ray Dorsey and co-chaired by Dr. Blair Leavitt, this year’s annual meeting focused on building the future of the HSG, and featured keynote presentations, educational courses, and interactive working group sessions over three days, designed to facilitate further exploration of potential life-changing treatments. The 9th Annual HD Clinical Research Symposium took place in the morning of the final day, followed by a family-oriented educational program for members of the HD community.
The first open session of the meeting was a panel session titled “The FDA is coming: Now what?” HSG Site investigators were invited to share their experiences, and provided key lessons on how to survive a fateful visit from the FDA. A similar forum led by veteran Project Managers Elise Kayson and Jody Goldstein asked study PIs from First-HD, SIGNAL-HD and PRIDE-HD to discuss the anticipated and unanticipated challenges they encountered throughout their clinical trials. Working group sessions covering care, education, behavior, and rehabilitation aspects of HD were available to all attendees, enabling both expert and junior researchers to discuss recent developments in their specific fields of interest.
Dr. Ray Dorsey discussed the recent progress of the HSG and provided an insight into the directions the group wishes to pursue in the next five years. He emphasized the value of bringing the HD community together annually, highlighted by incorporating the ENROLL-HD North American Meeting into the first day of proceedings. He acknowledged the success of the Phase III trial for SD-809, which concluded that the compound not only improved chorea symptoms, but also total motor score, functional, and quality of life measures. Dr. Dorsey also highlighted new online initiatives that allow patients, families, and researchers to communicate more freely and easily, including the updated HSG Link website, and recent ventures into social media (Twitter and Facebook).
Dr. Ira Shoulson, founder of the HSG in 1994, and Chair of the HSG Executive Committee 2008−2014, welcomed new HSG scholarship recipients at the inaugural HSG breakfast, which encouraged mentorship, and provided networking opportunities, while also inviting new members to share their thoughts for the future of HSG with the committee.
Dr. Michael Hayden presented the keynote presentation, “Ripples of hope: Prospects for the future in HD.” He talked about Teva Pharmaceutical Industries’ success in developing new treatments, particularly dutetrabenazine (SD-809), and the importance of considering the commonality of pathways across neurodegenerative disorders to help drive future HD research. He provided hope to families, stating that HD can become a treatable disease comparable to the management of multiple sclerosis or HIV.
Also noteworthy was the “Novel outreach methods” session, in which Dr. Kevin Biglan, Ms. Chandler Swope, and Ms. Katie Jackson described their respective work developing telemedicine, “youth-friendly” promotional material, and Help 4 HD, a multimedia communication platform.
Prof. David Corey, Dr. Lisa Stanek and Prof. Sarah Tabrizi covered the exciting new therapeutic area of gene silencing, introducing attendees to the basic cellular mechanisms, as well as the potential benefits and risks.
Chaired by Dr. Biglan, the 9th Annual HD Clinical Research Symposium opened with an inspiring presentation by Dr. Erika Bjorklund, speaking from her own experiences about how to deal with a diagnosis of HD in the family. Dr. Kyle Fink described the prospect of using mesenchymal stem cells as a potential therapy. Dr. Claudia Testa presented on the recent success of Teva’s SD-809 in the First-HD trial. The keynote address on gene silencing by Dr. Juan Sanchez-Ramos echoed a recurring theme from the conference, expressing optimism that together, the HD community will be able to find a way to stop the progression of this disease.