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

Author:

Thompson Alan J1ORCID,Moccia Marcello2ORCID,Amato Maria Pia3ORCID,Calabresi Peter A4ORCID,Finlayson Marcia5ORCID,Hawton Annie6ORCID,Lublin Fred D7,Marrie Ruth Ann8ORCID,Montalban Xavier9,Panzara Michael10,Sormani Maria Pia11ORCID,Strum Jon12,Vickrey Barbara G7,Coetzee Timothy1314ORCID

Affiliation:

1. Queen Square Multiple Sclerosis Centre, Department of Neuroinflammation, UCL Queen Square Institute of Neurology, NIHR University College London Hospitals Biomedical Research Centre, Faculty of Brain Sciences, University College London, London, UK

2. Department of Molecular Biology and Molecular Biotechnology, Federico II University of Naples, Naples, Italy Multiple Sclerosis Unit, Policlinico Federico II University Hospital, Naples, Italy

3. Department NEUROFARBA, Section of Neurosciences, University of Florence, Florence, Italy IRCCS Fondazione Don Carlo Gnocchi, Florence, Italy

4. Department of Neurology and The Solomon H. Snyder Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, MD, USA

5. School of Rehabilitation Therapy, Queens University, Kingston, ON, Canada

6. University of Exeter Medical School, University of Exeter, Exeter, UK

7. Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, USA

8. Departments of Medicine & Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada

9. Multiple Sclerosis Centre of Catalonia and Department of Neurology-Neuroimmunology, Hospital Universitari Vall d’Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain

10. Neurvati Neurosciences, New York, NY, USA

11. Department of Health Sciences, University of Genoa, Genoa, Italy IRCCS Ospedale Policlinico San Martino, Genoa, Italy

12. RealTalk MS, Long Beach, CA, USA

13. National Multiple Sclerosis Society, 733 Third Avenue, New York, NY 10017, USA

14. National Multiple Sclerosis Society, New York, NY, USA

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.

Funder

European Committee for Treatment and Research in Multiple Sclerosis

National Multiple Sclerosis Society

Publisher

SAGE Publications

Subject

Neurology (clinical),Neurology

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