Do the current MS clinical course descriptors need to change and if so how? A survey of the MS community

Alan J. Thompson, Marcello Moccia, Maria Pia Amato, Peter A. Calabresi, Marcia Finlayson, Annie Hawton, Fred D. Lublin, Ruth Ann Marrie, Xavier Montalban, Michael Panzara, Maria Pia Sormani, Jon Strum, Barbara G. Vickrey, Timothy Coetzee

Research output: Contribution to journalArticlepeer-review

Abstract

Background and Objectives: The current clinical course descriptors of multiple sclerosis (MS) include a combination of clinical and magnetic resonance imaging (MRI) features. Recently there has been a growing call to base these descriptors more firmly on biological mechanisms. We investigated the implications of proposing a new mechanism-driven framework for describing MS. Methods: In a web-based survey, multiple stakeholders rated the need to change current MS clinical course descriptors, the definitions of disease course and their value in clinical practice and related topics. Results: We received 502 responses across 49 countries. In all, 77% of the survey respondents supported changing the current MS clinical course descriptors. They preferred a framework that informs treatment decisions, aids the design and conduct of clinical trials, allows patients to understand their disease, and links disease mechanisms and clinical expression of disease. Clinical validation before dissemination and ease of communication to patients were rated as the most important aspects to consider when developing any new framework for describing MS. Conclusion: A majority of MS stakeholders agreed that the current MS clinical course descriptors need to change. Any change process will need to engage a wide range of affected stakeholders and be guided by foundational principles.

Original languageEnglish (US)
Pages (from-to)1363-1372
Number of pages10
JournalMultiple Sclerosis Journal
Volume29
Issue number11-12
DOIs
StatePublished - Oct 2023

Keywords

  • Multiple sclerosis
  • clinical course
  • progression
  • progressive multiple sclerosis
  • relapses
  • relapsing multiple sclerosis

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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