Huntington Study Group

Huntington Study Group 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.

Volume 35 of HD Insights is here!This "HD in the Age of AI" issue explores the growing role of artificial intelligence i...
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/

Today, the HSG would like to express our gratitude to the entire HD Community. At the core of every clinical trial prot...
03/23/2026

Today, the HSG would like to express our gratitude to the entire HD Community. At the core of every clinical trial protocol, in the details of each trial visit, in the results of every lab test, and in the day-to-day running of an HD clinic, there is a patient and family with hope for an effective treatment. Thank you to all of the HD researchers, clinicians, pharmaceutical companies, clinical trial vendors/partners, advocacy groups, and, most importantly, to the study participants, caregivers, and families who give so much of themselves to help accelerate treatments that will make a difference for those impacted by Huntington’s disease.

Meet the inaugural HD-PACT Fellows!Developed in collaboration with CHDI Foundation, Huntington Study Group, Huntington's...
03/12/2026

Meet the inaugural HD-PACT Fellows!

Developed in collaboration with CHDI Foundation, Huntington Study Group, Huntington's Disease Foundation, and Huntington's Disease Society of America, the program invests in the next generation of clinicians and researchers dedicated to advancing Huntington disease care.

Beginning in July 2026, fellows will train at leading academic institutions while gaining experience in multidisciplinary HD care and research.

New CME opportunity for healthcare providers caring for people impacted by Huntington disease.Huntington Study Group, in...
03/11/2026

New CME opportunity for healthcare providers caring for people impacted by Huntington disease.

Huntington Study Group, in collaboration with Vanderbilt University Medical Center, has launched a new CME4HD course focused on recognizing and managing the neuropsychiatric symptoms of Huntington disease.

This interactive, self-paced module uses real-world case studies to help clinicians across specialties better recognize complex cognitive, behavioral, and psychiatric presentations of HD. The goal is to support earlier diagnosis, improve patient care, and strengthen clinical research across the HD community.

Read the full announcement: https://huntingtonstudygroup.org/news/huntington-study-group-and-vanderbilt-university-medical-center-launch-newcme4hd-course-on-neuropsychiatric-symptoms-in-huntington-disease/

Save the Date for HD Across the Lifespan: HSG Clinical Care & Research SymposiumThis year, Huntington Study Group is pro...
02/23/2026

Save the Date for HD Across the Lifespan: HSG Clinical Care & Research Symposium

This year, Huntington Study Group is proud to host three regional symposiums bringing our HD community together in:

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

These meetings are a unique opportunity for pharmaceutical companies, interdisciplinary healthcare providers, research sites, and advocacy leaders to come together to jointly discuss regional and national opportunities in Huntington’s disease care and research.

By creating space for open dialogue and collaboration, we strengthen the continuum of care for HD patients, caregivers, and families.

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

Are you a researcher or clinician in the HD field? We’d value your input!As we strengthen collaboration with our colleag...
02/23/2026

Are you a researcher or clinician in the HD field? We’d value your input!

As we strengthen collaboration with our colleagues at the European Huntington's Disease Network, we are revitalizing HSG Working Groups to maximize impact and reduce redundancy across global HD research efforts.

Your expertise helps shape:
• International collaboration
• Scholarly publications
• Congress presentations
• Advancements in HD research and care

If you are actively involved in HD research or clinical care, please take a few minutes to complete our survey, which will be open until February 27.

Link to survey: https://app.smartsheet.com/b/form/33612f602459426894503c374981f3cd

The February issue of HSG’s newsletter, Inside the Helix, is now available.We’re excited to share the latest updates fro...
02/12/2026

The February issue of HSG’s newsletter, Inside the Helix, is now available.

We’re excited to share the latest updates from HSG, including:
• New Executive Committee and Advisory Council leadership
• 7 HD-PACT fellowships awarded
• Upcoming 2026 regional symposia info
• Trial and research updates
• News on our working groups

Thank you for being part of our shared mission to advance Huntington’s disease research.

Download the full newsletter here:https://huntingtonstudygroup.org/wp-content/uploads/2026/02/February-2026-Newsletter.pdf

What role is AI (Artificial Intelligence) playing in Huntington’s disease today?We want to hear from clinicians, researc...
02/04/2026

What role is AI (Artificial Intelligence) playing in Huntington’s disease today?

We want to hear from clinicians, researchers, industry and families to better understand how AI is being used across the HD community.

Take our quick 5-minute, anonymous survey to help shape an upcoming HD Insights article on AI's role in HD research, care, education, and beyond.

The survey closes on Friday, February 6.

Link to survey: https://app.smartsheet.com/b/form/b43ca064f82944b8b90e9aa7dea0f1b0

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of ...
09/29/2025

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of Huntington’s disease (HD) chorea.

If you live with HD chorea or care for someone who does, you may qualify to take part in this one-time online survey. Help advance HD research and get compensated for your time.
🕐 30–45 minute one-time online survey
💳 compensation of up to $50 in the form a digital gift card
📲 Learn more and enroll at https://myhdstory.org/

-
El Huntington Study Group y Teva están lanzando un nuevo estudio de investigación sobre myHDstory® para comprender mejor la carga de la enfermedad de corea de Huntington (HD).
Si vive con corea de HD o cuida a alguien que lo hace, es posible que reúna los requisitos para participar en este cuestionario en línea único. Ayude a hacer avanzar la investigación de HD y reciba una compensación por su tiempo.
🕐 Cuestionario en línea único de 30 a 45 minutos
💳 Compensación de hasta 50 USD en la forma de una tarjeta de regalo digital
📲 Obtenga más información e inscríbase en https://myhdstory.org/

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of ...
09/29/2025

The Huntington Study Group and Teva are launching a new research study on myHDstory® to better understand the burden of Hutington’s disease (HD) chorea.

If you live with HD chorea or care for someone who does, you may qualify to take part in this one-time online survey. Help advance HD research and get compensated for your time.

🕐 30–45 minute one-time online survey
💳 compensation of up to $50 in the form a digital gift card
📲 Learn more and enroll at https://myhdstory.org/



-

El Huntington Study Group y Teva están lanzando un nuevo estudio de investigación sobre myHDstory® para comprender mejor la carga de la enfermedad de corea de Huntington (HD).

Si vive con corea de HD o cuida a alguien que lo hace, es posible que reúna los requisitos para participar en este cuestionario en línea único. Ayude a hacer avanzar la investigación de HD y reciba una compensación por su tiempo.

🕐 Cuestionario en línea único de 30 a 45 minutos
💳 Compensación de hasta 50 USD en la forma de una tarjeta de regalo digital
📲 Obtenga más información e inscríbase en https://myhdstory.org/

08/27/2025

Connect. Learn. Share. Join us in Nashville on Oct 11 for HD Community Research Day, a free event for individuals and families impacted by Huntington’s disease. Learn more or register here: https://tinyurl.com/2mpb3cuw

This special day offers accessible updates on HD research, but just as importantly, it’s a chance to meet others living with HD, caregivers, advocates, and experts in the field. Whether you’re interested in the latest studies or simply want to connect with people who understand your journey, there’s something here for you. Together we’ll explore what’s new in HD, share experiences, and strengthen the bonds of this community. We welcome you to be part of the conversation in Nashville.

Address

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

Website

Alerts

Be the first to know and let us send you an email when Huntington Study Group posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to Huntington Study Group:

Shortcuts

Share

Category

Our Story

The Huntington Study Group is a world leader in conducting high-quality clinical research studies, and educating healthcare providers in Huntington disease (HD). We have the first and largest HD clinical research network of over 600 active and compassionate investigators, coordinators, scientists and HD experts at over 120 HSG Credentialed Research Sites across the globe dedicated to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by HD.