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NewsHuntington Study Group Achieves Last Patient Last Visit for Its Observational Study to Test Virtual Use of the Unified Huntington’s Disease Rating Scale®

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Rochester, NY  May 16, 2023 – The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., announces an important milestone in the novel observational study Virtual Unified Huntington’s Disease Rating Scale (vUHDRS™). The last participant completed the last visit, marking study completion.

The purpose of this study is to determine the reliability of administering all sections of the Unified Huntington’s Disease Rating Scale (UHDRS®) virtually compared to in-person for clinical and clinical trial use. The UHDRS® is the gold-standard in assessing motor function, cognitive function, behavioral abnormalities, and functional capacity in Huntington’s disease (HD). Since the tool was originally developed in 1993, the HSG-owned instrument has been used in part or in total as the primary endpoint in many HD trials. The changing face of clinical trials is prompting the need for reliable tools for assessing and interacting with patients and research participants remotely. This need became clearer and more urgent during the COVID-19 pandemic, accelerating HSG’s development of this study.

vUHDRS™ has the potential to positively impact care delivery and clinical trial operations as part of remote and hybrid trials, effectively removing some of the barriers people face when participating in research studies. This study could also increase data availability, frequency of data collection and could enhance clinical care.

Samuel Frank, MD, Associate Professor of Neurology, Director of the Huntington’s Disease Society of America Center of Excellence at Beth Israel Deaconess Medical Center, and Principal Investigator of the vUHDRS™ study, said “It’s exciting to be part of this critical study that will enhance future clinical trials in HD. We couldn’t do any of this without an incredible team and the help of our dedicated participants for whom we are so thankful.”

The vUHDRS™ study was conducted at 16 HSG sites across the US, where 60 subjects with motor manifest HD were followed over approximately six weeks through a combination of in-person and remote visits. The study team is beginning to analyze the data and hopes to announce results in third quarter 2023.

More information about this study will also be presented at HSG’s 30th Annual Meeting in November. To learn more about the meeting, including sponsorship opportunities, click here.  
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 of over 800 experts in Huntington’s disease 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. 

To read the full press release, click here.