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

Rochester, NY, 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 myHDstory™, 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 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.


Huntington Study Group

Emma Grushkin