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Updated: Jan 24, 2026

Comprehensive Autopsy Program for Individuals with Multiple Sclerosis
Published on: July 19, 2019
Setting priorities for how future research in multiple sclerosis in Canada considers equity, diversity and inclusion:
Ruth Ann Marrie1, Afolasade Fakolade2, Colleen J Maxwell3
1Department of Medicine, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada; Department of Community Health and Epidemiology, Faculty of Medicine, Dalhousie University, Halifax, Canada; Department of Medicine, Nova Scotia Health Authority, Halifax, NS, Canada.
Background:
Research studies in multiple sclerosis (MS) lack diversity.
Objective:
To gain consensus on priorities about how future research in MS in Canada addresses equity, diversity, and inclusion (EDI) using a modified e-Delphi technique.
Methods:
We recruited people with lived experience (people with MS (PwMS) or family members); EDI researchers; and clinicians with experience caring for PwMS. The first survey was developed based on a scoping review, EDI literature, and advisory group meetings and included items for five domains: measuring and reporting diversity characteristics, recruiting diverse research populations, role of funders, role of publishers/editors, and training. All items were rated on a 7-point scale with anchors of 1 (aspirational), 4 (achievable), and 7 (core). We undertook three rounds. New items were added after the first round; consensus was defined as a standard deviation ≤1.0.
Results:
Ultimately, 87 people (36 with lived experience, 28 EDI researchers, 23 MS clinicians) completed the first survey, of whom 82 (94.2%) completed the second survey and 81 (93.1%) completed the third. Forty-five items reached consensus across the five domains. Nearly all these items were rated as achievable.
Conclusions:
This e-Delphi identified priorities for how future MS research in Canada addresses EDI.
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