Press Release

Huntington Study Group Announces Results from the HD-Net Assessment on the State of Care for Huntington’s Disease in the United States

Rochester, NY  October 25, 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 the results from the novel HD-Net survey, which examined the United States Huntington’s disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists.

“The importance of this research survey is the real-world sampling of HD care across all types of medical practices in the United States and how it shows us the inequality in care levels with different practice types. This is a call for us to increase outreach and education to those practices who are already seeing HD patients to improve care and access to specialty services,” said Lauren Seeberger, MD, HD-Net Principal Investigator and Associate Professor at the University of Colorado.

The HSG collaborated with the University of Colorado, University of California San Diego, Genentech, Inc., and RAND Corporation, to make this novel survey accessible for qualifying United States residents to access. The HD-Net is obtained a clearer understanding of current care structure and delivery of care through a survey of representative US physicians treating HD patients. The survey included 40 closed-ended evaluative items and one open-ended item to a sample of 339 US practices. Unique to this survey was the inclusion of non-specialists. Findings concluded that HD care was inconsistently applied across the US. Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing and procedures as compared to those with fewer numbers of HD patients.

“We would like to thank Lauren Seeberger, MD; Jody Corey-Bloom, MD, PhD; Michael O’Brien; Diana Slowiejko, PharmD, PhD; Danielle Schlang, MA; Marika S. Booth, MS; Beth Ann Griffin, PhD; and Peggy G. Chen, MD, MSc, MHS for their work on HD-Net,” said Shari Kinel, JD, Chief Executive Officer of the Huntington Study Group. “The HSG would also like to extend our appreciation to Diana Slowiejko, PharmD, PhD, the Principal Med Science Director of Genentech, for her pivotal role in project development and support.

Acknowledgment
Acknowledgment to the HD-Net Steering Committee (Donald Higgins MD, Samuel S. Stratton VA Medical Center, Albany, New York; Joseph Jankovic MD, Baylor College of Medicine, Houston, Texas; Jamie Levey, MBA, CHDI Foundation; Karen Marder MD, MPH, Columbia University Medical Center, New York, New York; Julie Parsons MD, Children’s Hospital Colorado, Aurora, Colorado; Abdul R Shaikh, PhD, Guidehouse, Washington, DC; Emily Troncoso; Louise Vetter, Huntington’s Disease Society of America, New York, New York); and for the generous support from Genentech, Inc.

For more information about HD-Net, visit https://huntingtonstudygroup.org/hd-net/.

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 www.huntingtonstudygroup.org.

About HD-Net
The HD-Net Community was formed in 2019 through funding by Genentech, managed by the Huntington Study Group (HSG) and supported by leaders of the HD community – CHDI, HDSA and others. HD-Net is committed to elevating the level of HD care and bridging the gaps that exist in the access to that care. HD-Net’s initial focus is to improve care, deepen HD knowledge, provide resources, emphasize the patient, harness technology, and support new therapies.

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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 Modality.ai.

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 https://huntingtonstudygroup.org/myhdstory/  

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 www.huntingtonstudygroup.org.

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 Modality.ai

Modality.ai 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 Modality.ai 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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