Huntington Study Group

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Accelerating treatments that make a difference for Huntington's disease. For more information, visit www.huntingtonstudygroup.org.

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 of over 800 experts in Huntington’s disease at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration.

10/26/2026

Volume 36 of HD Insights is here!

This issue centers the Huntington’s disease community and explores how collaboration, research, and patient perspectives are shaping the future of HD care and advocacy. From advances in brain donation research to practical guidance for clinicians and powerful personal stories, this edition highlights the many ways the HD community is moving progress forward.

Read now: https://huntingtonstudygroup.org/volume/volume-36/

08/04/2026

Calling all residents and fellows dedicated to advancing Huntington’s disease care!

The 4th Annual ENGAGE-HD is a one-day virtual course designed for clinicians and clinician-scientists in training who are interested in learning more about caring for individuals and families affected by Huntington’s disease (HD).

Presented by the Huntington Study Group, this focused program covers essential topics to build your clinical foundation:
• Motor and nonmotor symptoms
• The genetic testing process
• Treatment options
• Current clinical research

🗓 Date: Saturday, November 14, 2026
⏰ Time: 10:00 a.m. – 2:35 p.m. CST (time subject to change)
💻 Format: Virtual Event

Register online: https://huntingtonstudygroup.org/engage-hd-2026/

07/31/2026

We extend our sincere gratitude to Acting FDA Director Kyle Diamantas and collective staff for convening the Huntington’s Disease Roundtable.

As organizations united in support of everyone impacted by Huntington’s disease, we thank the U.S. Food and Drug Administration for convening yesterday’s Huntington’s Disease roundtable.

We appreciate the opportunity to bring together people with lived experience, advocates, researchers, and clinicians to engage in meaningful dialogue. Collaboration like this ensures the voices of the Huntington’s disease community remain at the center of research, drug development, and regulatory decision-making.

We look forward to continuing to work together to accelerate progress and bring meaningful treatments to our community.

07/15/2026

When it comes to executing a successful clinical trial, confidence at the site level changes everything.

In this installment of The HD Symposia Scoop, Dr. Daniel Claassen highlights the ultimate objective for this year’s Ready for Research sessions. The focus is fixed on a single, critical theme: protecting the endpoint.

Dr. Claassen emphasizes that a trial’s success relies heavily on the team's ability to deliver high-quality, accurate data on the clinic floor. Our upcoming regional meetings are designed to ensure every investigator and clinical coordinator leaves with the tools, training, and confidence necessary to execute their roles properly and effectively.

When our site teams feel empowered to protect the integrity of the data, the entire research community wins.

Don't miss the opportunity to align with an expert network dedicated to driving excellence in clinical ex*****on. Register for your regional meeting today: https://huntingtonstudygroup.org/annual-meeting/hsg-clinical-care-research-symposia-series-2026/

05/14/2026

Registration is now open for the 2026 HSG Clinical Care & Research Symposium Series: Huntington’s Disease Across the Lifespan.

Join healthcare professionals, researchers, coordinators, advocacy leaders, and industry partners from across the HD community for a collaborative regional series focused on advancing Huntington’s disease care and research.

This interdisciplinary program will explore:
• Best practices in HD clinical care and research
• Real-world challenges in care delivery
• Emerging therapeutic and research advancements
• Collaboration across HSG sites, HDSA Centers of Excellence, and partner institutions

2026 Regional Locations:
📍 Sacramento, CA | September 17–18
📍 Houston, TX | September 24–25
📍 Boston, MA | October 29–30

Each regional meeting begins on Thursday with a dedicated Ready for Research session designed for healthcare professionals focused on strengthening clinical research readiness, addressing operational challenges, and sharing practical solutions across HD research sites. The full-day symposium follows on Friday, bringing together the broader HD community for collaborative discussions on clinical care and research.

Learn more and register today: https://huntingtonstudygroup.org/annual-meeting/hsg-clinical-care-research-symposia-series-2026/

05/07/2026

Introducing Ready for Research — a dedicated, case-based forum designed for healthcare professionals supporting HD research.

As part of the HSG Symposia Series, “HD Across the Lifespan,” this interactive session focuses on real-world operational challenges, practical solutions, and the sharing of best practices to support excellence in clinical research.

Through small group discussion and peer-driven learning, participants will have the opportunity to collaborate, exchange experiences, and explore strategies they can apply directly within their own sites and teams.

2026 Ready for Research Sessions:

📍 Sacramento, CA — September 17
Symposium to follow on September 18

📍 Houston, TX — September 24
Symposium to follow on September 25

📍 Boston, MA — October 29
Symposium to follow on October 30

Registration details coming soon for each region. We look forward to collaborating with you in 2026!

04/08/2026

Volume 35 of HD Insights is here!

This "HD in the Age of AI" issue explores the growing role of artificial intelligence in advancing discovery, enhancing care, and informing the future of clinical research. It also features perspectives on global access, emerging therapies, and the legacy driving progress forward.

Don’t miss this forward-looking edition bringing together voices across science, care, and the HD community.

Read it now: https://huntingtonstudygroup.org/volume/volume-35/

Address

95 Allens Creek Road, Building 1, Suite 132
Rochester, NY
14618

Website

http://www.huntingtonstudygroup.org/

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