Huntington Study Group® Observational Pilot Study Shows HSG’s myHDstory®  Platform Reaches the Unreachable

Rochester, NY, October 11, 2023 – The Huntington Study Group® (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc. (HSGCR), a world leader in conducting clinical trials for Huntington’s disease (HD), today announces that the pilot observational study on their innovative online direct-to-patient research platform, myHDstory®, is complete with unprecedented topline results.

The pilot study, Making HD Voices Heard, not only achieved its goal of capturing the patient voice to allow for a better understanding of how HD patients experience their symptoms and how the disease affects their wellbeing, but also indicates that HSG’s myHDstory® platform successfully reaches participants who don’t usually take part in research. The results show that most participants in the study had never participated in any trials or studies. In addition, there was much higher racial and geographical diversity seen in participants than in any other HD study.

Karen Anderson, MD, Professor of Psychiatry & Neurology at Georgetown University and longtime HSG member, was the study’s Principal Investigator. Dr. Anderson stated, “By allowing participation in research anytime, anywhere, HSG has developed a tool that breaks down some of the barriers to research participation, allowing for a better understanding of HD and the potential for improved data from patient reported outcome measures. The high participation rate, the racial and ethnic diversity, and the relatively young age of myHDstory® participants are meaningful.”

Making HD Voices Heard successfully reached over 400 participants in the US reporting their lived HD experience using the HD-Patient Report of Problems (HD-PROPTM), a tool created by Ira Shoulson, MD and developed by Grey Matter Technologies and to interpret and classify symptoms reported by patients in their own words.  Dr. Shoulson, HSG founder, also served as the study Co-Principal Investigator.

“HSG is thrilled by the results of the pilot study and the team is working diligently on developing the next two studies for the myHDstory® platform. These will include longitudinal capabilities so we can measure changes over time. We’re grateful to the study participants who devoted their time and energy to this study and whose dedication supports our shared mission of accelerating treatments that make a difference,” said Shari Kinel, HSG CEO.

A conference call is scheduled in mid-October to provide updates to the Making HD Voices Heard study participants.

An abstract detailing the pilot study’s results has been accepted for a poster presentation at Huntington Study Group’s annual meeting in Phoenix, AZ this November. To learn more or register for the meeting, visit For more information about myHDstory® or to sign up to receive updates about future studies, visit

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

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Huntington Study Group Announces myHDstory™ Pilot Study:  Making HD Voices ­­­Heard Has Reached Target Enrollment

Rochester, N.Y.  October 18, 2022 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, is pleased to announce that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its enrollment target. 

“The HSG is beyond thrilled by the level of participation in this first-of-its-kind study. We are extremely grateful to all the participants who enrolled,” said Dr. Karen Anderson, Professor of Psychiatry and Neurology at Georgetown University Medical Center and Principal Investigator of the Making HD Voices Heard study. “We hope the data and lessons learned from this pilot will inform and drive further virtual studies that will engage larger segments of the Huntington’s Disease (HD) population, family members, and caregivers, thereby improving overall development of HD care and treatments,” said Ira Shoulson, MD, Professor of Neurology at the University of Rochester and founder of Grey Matter Technologies, now a wholly owned subsidiary of

The HSG collaborated with technology companies Grey Matter Technologies and Neurotargeting LLC, to make this novel online research study accessible for qualifying United States residents to access. The myHDstory™ platform is intended to capture longitudinal data on Huntington’s disease from the patient perspective, giving voice to consenting adults to report what they feel, experience, and how they function with Huntington’s disease. This research platform is a significant opportunity for the HSG to serve the HD community because myHDstory™ enables collection of data from patients about their symptoms, without having to schedule in-office visits.
“We thank the Griffin Foundation, NJ Cure HD, Ira and Josie Shoulson, Elise Kayson-Rubin, and Richard Rubin for their financial support of myHDstory,” said Shari Kinel, Chief Executive Officer of the Huntington Study Group. “The HSG would also like to extend our appreciation to advocacy groups who helped raise awareness of the pilot study, including Help 4 HD, Huntington’s Disease Youth Organization (HDYO), HD Reach, and Huntington’s Disease Society of America (HDSA).” 

For more information about myHDstoryTM, visit  

About Huntington’s Disease

Huntington’s Disease (HD) is a hereditary neurodegenerative disease characterized by a movement disorder, psychiatric difficulties, and cognitive changes, usually beginning in middle adult life. About 40,000 people in North America have HD, and another 200,000 are considered “at risk” for inheriting the illness because they have (or had) a parent with HD. 

About Huntington Study Group / HSG Clinical Research

Founded in 1993 in Rochester, NY, the Huntington Study Group (HSG) is a not-for-profit organization comprised of the world’s first and largest collaborative network of experts in Huntington’s Disease whose mission is to seek treatments that make a difference for those affected by HD. HSG Clinical Research, Inc., a wholly owned subsidiary of the HSG, is a full-service clinical research organization that specializes on conducting trials in HD.  There are 700 credentialed HD experts at more than 120 HSG credentialed research sites worldwide.  The HSG also offers educational services like CME4HD™ for healthcare professionals and care providers on treating patients with HD. For more information, visit

About Neurotargeting

Neurotargeting was founded in 2007 by Pierre-Francois D’Haese, PhD., Benoit Dawant, PhD. and Peter Konrad, M.D PhD. Neurotargeting, LLC emerged from more than a decade of research performed at Vanderbilt University and supported by NIH funding focused on solving such issues. From this research emerged a unique system called Cranial vault, connecting some of the active groups researching the new potential of DBS such as Vanderbilt University, Ohio State University, Wake Forest University, and the VA in Richmond. With a unique research relationship with its partners, Neurotargeting has built a disruptive software platform. By linking care providers, neuroscience centers and device manufacturers, Neurotargeting aims at improving patients’ care experience and life.

About is a digital health startup, which acquired Grey Matter Technologies in June 2022. Grey Matter was founded in January 2017 by Ira Shoulson, MD and Carol A Christopher, PhD, who had worked together for nearly three decades to advance innovative medical products for patients with neurological and developmental disorders. Grey Matter’s founders, management team and advisors have long recognized the unmet need to harness the power of the patient’s story, typically told verbatim in unstructured language. Together with the team, they are leading the application of data science technologies aimed at Making Patients Heard™ in healthcare and clinical research settings.

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