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NewsHSG UPDATES: vUHDRS® Study Update

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July 2022

The Unified Huntington’s Disease Rating Scale (UHDRS®) was established to routinely assess motor, cognitive, behavioral and function in Huntington disease (HD) in a standardized fashion in 1996. Since that time we have evolved. We have computers in our pocket and the Internet was invented as a great tool. We have developed and tested many interventions since that time, but all research studies rely on assessments completed in person. The pandemic and other life events highlighted the need to assess patients and research participants remotely.

The virtual UHDRS® (vUHDRS®) study, funded and sponsored by the Huntington Study Group (HSG) 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 hybrid trials thereby reducing participant burden. 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. The study is about to start. We will be looking for about 60 participants who have motor manifest HD so that we can assess their symptoms in person and through a TeleVisit.