Huntington Study Group Enrolls First Participant for Its Observational Study to Test the Reliability of the Virtual Use of the Unified Huntington’s Disease Rating Scale

Rochester, NY, October 12, 2022 --(PR.com)-- The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD) for over 30 years, together with its Clinical Research Organization (“CRO”), the HSG Clinical Research, Inc., today announces the enrollment of the first participant of its novel and innovative observational study, Virtual Unified Huntington’s Disease Rating Scale (vUHDRS®), assessing the reliability of a virtual use of the HSG’s standard assessment tool, the Unified Huntington’s Disease Rating Scale (UHDRS®). The first participant was enrolled at Hereditary Neurological Disease Centre in Wichita, KS.

The HSG developed and owns the Unified Huntington’s Disease Rating Scale (UHDRS®) which was established in 1996 to assess motor, cognitive, behavioral and function in patients with Huntington’s Disease (HD) in a standardized fashion. The UHDRS® in part, or in whole, is commonly used as the primary endpoint in many HD trials. The pandemic and other life events highlighted the need to assess patients and research participants remotely.

The vUHDRS® study, funded and sponsored by the Huntington Study Group will determine the reliability of administering all sections of the UHDRS® virtually compared to in-person for clinical care and clinical trial use. The vUHDRS® study may assist with the development of remote and hybrid trials thereby reducing participant burden and increasing availability of data. In addition, consistent TeleVisit use of the vUHDRS® could enhance clinical care.

The study will be conducted at about 15 HSG sites in the United States and will be enrolling about 60 participants who have motor manifest HD. The gold standard of a complete in person UHDRS® will be compared to the assessment through a video-based TeleVisit.

“This study represents a significant step in making clinical research in Huntington’s disease more accessible to a larger population and offer the opportunity for more access to remote care in HD,” said Samuel Frank, MD, Associate Professor of Neurology and Director of the HDSA Center of Excellence at Beth Israel Deaconess Medical Center, and Principal Investigator of the vUHDRS® study. “We hope the data and lessons learned from this will support our firm belief that this key endpoint for HD studies can be effectively delivered in a virtual setting, thereby improving overall care and development of treatments for our patients and families impacted by HD.”

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.