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The virtual Unified Huntington’s Disease Rating Scale (vUHDRS®) study was successfully developed and conducted by Huntington Study Group® to assess reliability of the UHDRS® when administered virtually compared to in-person. Reliable tools to assess and interact with patients and research participants remotely are needed to keep up with the changing face of clinical trials, which became clearer and more urgent during the COVID-19 pandemic.

Topline results showed:

  • The modified motor portion and Total Functional Capacity had high intraclass correlation coefficients (ICCs).
  • All other functional, cognitive, and behavioral sections had ICCs consistent with excellent reliability.
  • Promise for the vUHDRS® tool to assist with development of remote and hybrid trials, thereby reducing participant barriers and burden, increasing data availability, and enhancing clinical care.
  • Participation in the study was voluntary.
  • There were 60 participants with motor manifest HD across 16 US HSG sites.

Study Inclusion Criteria:

  • Male or female and 18 years or older at the time of signing the informed consent
  • Able and willing to provide written informed consent
  • English speaking
  • Currently exhibit motor signs and symptoms of Huntington Disease
  • Have a genetic diagnosis of HD with an expanded CAG repeat (greater than or equal to 36) in the huntingtin (HTT) gene at or before Screening/Baseline visit from a validated laboratory
  • Have oral and written communication skills that are sufficient/adequate to complete all cognitive assessments
  • Are ambulatory, but may use any assistive device or require help
  • Are able to maintain stable medications for 30 days prior to Screening/Baseline through the second in-person visit
  • Have a study partner available to help with technology and set-up and to attend all study visits
  • Have the ability to get email on the device used for the study

Study Exclusion Criteria:

  • Are unable to complete cognitive or functional assessments due to inability to communicate
  • Are unable to obtain satisfactory internet connection (i.e., internet connection must be stable and support the audio and video needs without freezing or interruption) at home or designated location, even with provided equipment
  • Have inadequate space at home to assess 10 steps for gait assessments
  • Have active suicidal ideation endorsed with a score of 4 (Active Suicidal Ideation with Some Intent to Act, without Specific Plan) if the ideation occurred within 1 year of Screening or 5 (Active Suicidal Ideation with Specific Plan and Intent) on the C-SSRS if the attempt or acts were performed within 1 year of Screening/Baseline, or participants who, in the opinion of the Site Investigator (SI), present a serious risk of suicide.
  • Have received gene therapy or an investigational drug within 30 days or 5 half-lives, whichever is longer, of the Screening/Baseline visit or plan to use an investigational drug during this study.

The study lasted around six weeks with a combination of in-person and remote visits.

Eligible participants were asked to:

  • Participate in a combination of in-person and remote visits.
  • Use either HSG-assigned equipment including an iPad and a Mi-Fi hotspot or personal equipment with a secure internet connection for remote visits.

Enrollment for the vUHDRS® study is complete. If you are interested in receiving updates about future research opportunities, click here.

Topline results were shared with study participants through a virtual meeting and with researchers at both the 2023 International Congress of Parkinson’s Disease and Movement Disorders® and HSG’s 2023 annual meeting.