The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), today announces positive topline results from its Virtual Unified Huntington’s Disease Rating Scale® (vUHDRS®) observational study. This novel, innovative study assessed the reliability of virtual use of the HSG’s standard assessment tool, the Unified Huntington’s Disease Rating Scale (UHDRS®).
The analysis of the data was consistent with key portions of the scale showing excellent reliability. Specifically, the modified motor portion and the primary outcome measure of stage, the Total Functional Capacity, had high intraclass correlation coefficients (ICCs). In addition, all other functional, cognitive, and behavioral sections had ICCs consistent with excellent reliability. The vUHDRS® study may assist with the development of remote and hybrid trials thereby reducing participant burden and increasing availability of data.
The vUHDRS® study, funded and sponsored by Huntington Study Group, was inspired by the necessity to break down barriers, and allow remote assessments in HD trials. The COVID-19 pandemic accelerated vUHDRS™ development. The study was conducted at 16 HSG sites in the United States. Fifty-nine participants completed the study with about half using their own devices and the other half using HSG-provided tablets and portable Wi-Fi connections.
“These results are exciting for clinical research and patient communities. Clinical research in Huntington’s disease is one step closer to being more accessible to a larger population and offers 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. “The lessons learned and data from this study supports our 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.”
The vUHDRS® results will be presented at the International Congress of Parkinson’s Disease and Movement Disorders® in Copenhagen, Denmark, August 27-31, 2023, and at HSG’s annual meeting in Phoenix, AZ, November 2-4, 2023.
About the Unified Huntington’s Disease Rating Scale (UHDRS®)
The HSG developed and owns the UHDRS® which was established in 1996 to assess motor, cognition, behavior, and function in patients with Huntington’s disease in a standardized manner. The UHDRS® in part or in whole is commonly used as the primary endpoint in many HD trials. To learn more about the tool including licensing information, visit https://huntingtonstudygroup.org/uhdrs/.
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
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 is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.
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