Huntington Study Group® Holds 30th Annual Meeting
Rochester, NY — November 20, 2023 — The Huntington Study Group® (HSG®), a world leader in conducting clinical trials and providing educational programming for Huntington’s disease (HD), recently held its 30th annual meeting, HSG 2023, November 2-4 in Phoenix, AZ. Hundreds of scientists, industry partners, HSG research sites and members, advocacy groups, staff, HD patients, families, and caregivers from around the world convened to hear the latest in HD research and advancements, network with colleagues, and connect with a dedicated HD community.
This year’s sessions focused on 30 years of learnings, progress, and accomplishments since HSG’s founding and the discovery of the HD gene 1993. Presentations also discussed the changing future of clinical trials, emphasizing how the HSG is developing innovative approaches to conducting clinical trials to lessen the burden of participation. As the lead clinical research organization for industry sponsored multi-center global studies, the Huntington Study Group shared how HSG is developing novel approaches in clinical trials, including remote visits, wearable sensors, direct-to-participant virtual visits, and virtual assessment tools such as the vUHDRS™, a key assessment tool in HD trials. These approaches will enhance enrollment and participation in clinical research and ultimately accelerate treatments for those affected by Huntington’s disease.
“It was inspirational to gather for HSG’s 30th annual meeting, reflect on our accomplishments, and discuss the important work we’re focusing on for the HD community. For three decades, HSG has been the leader in convening its global network of researchers focused in HD. The power and impact of having so many dedicated people coming together to focus on improving the lives of patients with HD continues to inspire me,” said Samuel Frank, MD, Co-Chair of HSG’s Executive Membership Committee.
This year’s meeting highlights included a record-breaking number of submitted abstracts which are published in the Journal of Huntington’s Disease. In addition, two of HSG’s founders, Drs. Ira Shoulson and Karl Kieburtz, provided a 30-year view of the accomplishments in research and discovery for Huntington’s disease which laid the foundation for the current pipeline of investigational research including novel gene therapies. Attendees had the opportunity to learn about HSG’s comprehensive education center, the “HSG Brainery,” which will streamline the education, certification, and credentialing opportunities the organization provides to researchers, clinicians, healthcare partners, community members, and persons impacted by HD.
The inaugural session of ENGAGE-HD (Educate, Nurture, Gather, Acquire knowledge, Grow, and Excite professionals about Huntington’s disease), a groundbreaking program committed to finding and educating the next generation of HD researchers, was held on Saturday. This effort was developed and is being led by longtime HSG members Erin Furr Stimming, MD, Jee Bang, MD, MPH, and Jody Corey-Bloom, MD, PhD.
Saturday also marked the return of Family Day, an annual day-long program dedicated to patients, families, caregivers, and the local HD community. This year’s sessions were led and developed by Martha Nance, MD, Chair of HSG’s Family Education Committee, along with a team of Phoenix-area healthcare providers from Barrow Neurological Institute. One of this year’s keynote speakers at Family Day was Erin Paterson, author of the memoir, All Good Things. Erin spoke about her journey with genetic testing, infertility, and the search for happiness. Allie LaForce, TNT Sports reporter and one of the founders of HelpCureHD, a not-for-profit organization dedicated to providing grant funding for PGT-IVF (pre-implantation genetic testing in-vitro fertilization), shared her experience with genetic testing and PGT-IVF during this year’s Spotlight on Genetics panel session.
“HSG is dedicated to accelerating treatments that make a difference, and the efforts we were able to showcase this year in support of our mission are a testament to the strength of our network,” said Shari Kinel, CEO of HSG. “We are so proud of our accomplishments and are hopeful that we’ll have even more successes to share at next year’s meeting. Until then, we will continue doing everything we can to improve the lives of people impacted by HD through research, education, and collaboration.”
Planning for HSG 2024 is underway and a location will be announced soon.
About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.
About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.
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