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.
Study Type
OBSERVATIONAL
Enrollment
60
University of Alabama at Birmingham, Department of Neurology
Birmingham, Alabama, United States
University of Arkansas for Medical Sciences
Little Rock, Arkansas, United States
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
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
University of California, San Diego
La Jolla, California, United States
Georgetown University
Washington D.C., District of Columbia, United States
University of South Florida, Huntington Disease Center of Excellence
Tampa, Florida, United States
Northwestern University Medical Center, Department of Neurology
Chicago, Illinois, United States
Rush University Medical Center
Chicago, Illinois, United States
Indiana University School of Medicine
Indianapolis, Indiana, United States
Hereditary Neurological Disease Center
Wichita, Kansas, United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts, United States
...and 7 more locations
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