Evaluating the longitudinal properties of the Duchenne Video Assessment (DVA)- ARISE, a remote study
Principal Author: Amber Sapp
Duchenne muscular dystrophy (DMD) clinical functional assessments are predominately timed and endurance assessments. However, these assessments do not capture the quality of movement, as it relates to ease of movement. This concept is defined as the level of modifications, compensatory movements and habitual adaptive movements an individual uses to complete everyday tasks. How an individual with DMD completes a task is insightful to disorder progression.
The Duchenne Video Assessment (DVA) is a novel tool that quantifies these compensations, providing a standardized way to assess quality of movement as an indication of disorder severity. ARISE is a prospective and longitudinal study of individuals with DMD aimed at creating a database of functional motor abilities in this population to support validation efforts of the DVA. The purpose of ARISE is to create a database of DVA data including test-retest and longitudinal captures that can be used to further develop and validate the measure and capture DMD assessments of physical function (North Star Ambulatory Assessment (NSAA) and Performance of Upper Limb 2.0 (PUL 2.0) for the purposes of validating the DVA and establishing the measure’s sensitivity to change.
180 adult and pediatric (2-17 years) individuals diagnosed with DMD will be included. The DVA will be captured at Baseline, Baseline re-test, Months 6, 12, 18 and 24. Standardized assessments of physical function including the North Star Ambulatory Assessment (NSAA) and/or Performance of Upper Limb 2.0 (PUL 2.0) will be remotely administered at Baseline, Months 12 and 24 by physical therapists with experience remotely administering these assessments. DVA trained physical therapists (certified raters) will score the DVA using standardized DVA scorecards at each timepoint. Raters will be blinded to the video capture timepoint after baseline when scoring follow-up videos relative to baseline. Physical therapists will score the NSAA and PUL 2.0 according to the outcome measures protocol. Additionally, participants will be asked to electronically complete questionnaires at baseline (e.g., demographics, medical history) and follow up timepoints Months 6, 12, 18 and 24 to report changes to treatment and/or therapy.
Data collected during the study will also be used to establish measurements properties and to refine rater training programs for the DVA outcome measure. CONCLUSION This study will evaluate the measurement properties of the DVA for future clinical trials as a primary or secondary endpoint by providing data sufficient to establish the instrument’s reliability, validity, and sensitivity to detect change.
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