Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository: Perceived Challenges and Motivators for Sharing Data.

Abstract

Background: Multiple sclerosis (MS) rehabilitation evidence is limited due to methodological factors, which may be addressed by a data repository. We describe the perceived challenges of, motivators for, interest in participating in, and key features of an international MS rehabilitation data repository.

Methods: A multimethod sequential investigation was performed with the results of two focus groups, using nominal group technique, and study aims informing the development of an online questionnaire. Percentage agreement and key quotations illustrated questionnaire findings. Subgroup comparisons were made between clinicians and researchers and between participants in North America and Europe.

Results: Rehabilitation professionals from 25 countries participated (focus groups: n = 21; questionnaire: n = 166). The top ten challenges (C) and motivators (M) identified by the focus groups were database control/management (C); ethical/legal concerns (C); data quality (C); time, effort, and cost (C); best practice (M); uniformity (C); sustainability (C); deeper analysis (M); collaboration (M); and identifying research needs (M). Percentage agreement with questionnaire statements regarding challenges to, motivators for, interest in, and key features of a successful repository was at least 80%, 85%, 72%, and 83%, respectively, across each group of statements. Questionnaire subgroup analysis revealed a few differences (P < .05), including that clinicians more strongly identified with improving best practice as a motivator.

Conclusions: Findings support clinician and researcher interest in and potential for success of an international MS rehabilitation data repository if prioritized challenges and motivators are addressed and key features are included.