Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

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DOI

  • Kathleen M. Zackowski, National MS Society
  • ,
  • Jennifer Freeman, University of Plymouth
  • ,
  • Giampaolo Brichetto, Italian MS Society and Foundation
  • ,
  • Diego Centonze, University of Rome Tor Vergata
  • ,
  • Ulrik Dalgas
  • John DeLuca, Kessler Foundation
  • ,
  • Dawn Ehde, University of Washington
  • ,
  • Sara Elgott, MedDay Pharmaceuticals
  • ,
  • Vanessa Fanning, International Progressive MS Alliance
  • ,
  • Peter Feys, Hasselt University
  • ,
  • Marcia Finlayson, Queen's University Kingston
  • ,
  • Stefan M. Gold, Charité – Universitätsmedizin Berlin
  • ,
  • Matilde Inglese, Icahn School of Medicine at Mount Sinai
  • ,
  • Ruth Ann Marrie, University of Manitoba
  • ,
  • Michelle Ploughman, Memorial University of Newfoundland
  • ,
  • Christine N. Sang, Harvard University
  • ,
  • Jaume Sastre-Garriga, Autonomous University of Barcelona
  • ,
  • Caroline Sincock, International Progressive MS Alliance
  • ,
  • Jonathan Strum, International Progressive MS Alliance
  • ,
  • Johan van Beek, F. Hoffmann-La Roche AG
  • ,
  • Anthony Feinstein, University of Toronto

Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.

Original languageEnglish
JournalMultiple Sclerosis Journal
Volume27
Issue7
Pages (from-to)989-1001
Number of pages13
ISSN1352-4585
DOIs
Publication statusPublished - Jun 2021

Bibliographical note

Publisher Copyright:
© The Author(s), 2021.

    Research areas

  • cognition, fatigue, mobility, pain, Symptoms, upper extremity impairment

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