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

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 n...

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Detalles Bibliográficos
Autores: Thompson, Alan|||0000-0002-4333-8496, Moccia, Marcello|||0000-0003-2613-3090, Amato, Maria Pia|||0000-0003-3325-3760, Calabresi, Peter A.|||0000-0002-7776-6472, Finlayson, Marcia|||0000-0002-1774-4810, Hawton, Annie|||0000-0002-1336-5899, Lublin, Fred D., Marrie, Ruth Ann|||0000-0002-1855-5595, Montalban, Xavier|||0000-0002-0098-9918, Sormani, Maria Pia|||0000-0001-6892-104X, Strum, Jon, Vickrey, Barbara G., Coetzee, Timothy|||0000-0002-3031-7549
Tipo de recurso: artículo
Fecha de publicación:2023
País:España
Institución:Universitat Autònoma de Barcelona
Repositorio:Dipòsit Digital de Documents de la UAB
Idioma:inglés
OAI Identifier:oai:ddd.uab.cat:320337
Acceso en línea:https://ddd.uab.cat/record/320337
https://dx.doi.org/urn:doi:10.1177/13524585231196786
Access Level:acceso abierto
Palabra clave:Multiple sclerosis
Progression
Relapses
Clinical course
Progressive multiple sclerosis
Relapsing multiple sclerosis
Descripción
Sumario: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. 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. 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. 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.

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