An observational study in Huntington Disease, sponsored by Huntington Study Group. Completed at 17 sites in United States. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2023-09-28.
Sponsored by Huntington Study Group · Observational
The Huntington Study Group currently holds the registered trademark for the Unified Huntington's Disease Rating Scale. The UHDRS® is a research tool which has been developed by the HSG to provide a uniform assessment of the clinical features and course of HD. The UHDRS® has undergone extensive reliability and validity testing and has been used as a major outcome measure by the HSG in controlled clinical trials.
The purpose of this research study is to determine if a standard HD assessment (the UHDRS®) is as reliable when conducted virtually as it is when conducted at an in-person visit (vUHDRS)
The UHDRS® is comprised of five components:
Motor Assessment Cognitive Assessment Behavioral Assessment Independence Scale Functional Assessment Total Functional Capacity (TFC)
This observational study seeks to characterize and compare in-person versus TeleVisits. Fifty percent of participants will be provided computer equipment for their remote assessment and the other 50% will use their existing home-based equipment for this purpose.
TeleVisit is a method for participants to connect to the research study team remotely, via video and audio connection either on their computer or iPad.
290 studies on the registry are indexed under Huntington Disease; 49 are open to participants now.
This study's enrollment of 60 is below the median of 90 across 80 observational studies indexed under Huntington Disease.
Browse Huntington Disease studies →Huntington Study Group is the lead sponsor of 5 studies on the registry; 1 is open to participants now.
Counted across the registry records on this site, refreshed daily.
Participants will be enrolled from clinics with physicians who are members of the Huntington Study Group
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Participants assigned to use technology they currently own
Participants provided technology by the sponsor
Unified Huntington's Disease Rating Scale
Total Motor Score: Minimum Score = 0 Maximum Score = 124 Higher scores indicate more impaired motor functioning
Time frame: from the TeleVisit to the second In-Person Visit, up to 6 weeks
Unified Huntington's Disease Rating Scale
Total Functional Capacity: Minimum Score = 0 Maximum Score = 13 Greater scores indicate higher functioning
Time frame: from the TeleVisit to the second In-Person Visit, up to 6 weeks
United Huntington's Disease Rating Scale
Independence Scale Minimum Score = 0 Maximum Score = 100 Greater scores indicate greater independence
Time frame: from the TeleVisit to the second In-Person Visit, up to 6 weeks
United Huntington's Disease Rating Scale
Functional Assessment Minimum Score = 0 Maximum Score = 25 Higher scores indicate greater functionality
Time frame: from TeleVisit to the second In-Person Visit, up to 6 weeks
Safety of conducting the UHDRS remotely
Reported adverse events
Time frame: from initial informed consent and continue until 30 days following the Participant's completion of the study
Unified Huntington's Disease Rating Scale
Cognitive Function: Verbal Fluency minimum = 0, maximum is based upon participant responses Symbol Digit Modality (SDMT) minimum = 0, maximum = 110 Stroop minimum = 0, maximum is based upon participant responses Higher scores indicate greater cognitive function
Time frame: from the TeleVisit to the second In-Person Visit, up to 6 weeks
Unified Huntington's Disease Rating Scale
Total Motor Score Minimum Score = 0 Maximum Score = 124 Higher scores indicate more impaired motor functioning
Time frame: Week 2, and Week 0 or Week 4
virtual Unified Huntington's Disease Rating Scale
Feasibility of completing the vUHDRS™ using participant personal equipment vs. Huntington Study Group provided equipment.
Time frame: from first In-Person visit through Follow-Up, up to 6 weeks
Unified Huntington's Disease Rating Scale
Behavior minimum = 0, maximum = 88 Higher scores indicate more behavioral symptoms
Time frame: from the TeleVisit to the second In-Person Visit, up to 6 weeks
Participant Satisfaction
Survey
Time frame: from first In-Person visit through Follow-Up, up to 6 weeks
Plan to share: Undecided
No publications or documents are linked to this record.
Ran from Sep 2022 to primary completion in May 2023, 7 months.
Of 32 observational studies under Huntington Disease, half reached primary completion within 40 months of starting (the median), counting those still running; a quarter within 34 and three quarters within 125. This study's 7 months is below that.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Sep 2023. You cannot join it, but the record below documents what was studied.
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Huntington Study Group