Do the current MS clinical course descriptors need to change and if so how? A survey of the MS community
Thompson, Alan (University College London)
Moccia, Marcello (Policlinico Federico II University Hospital (Nàpols, Itàlia))
Amato, Maria Pia (Università degli Studi di Firenze)
Calabresi, Peter A. (Johns Hopkins University School of Medicine Baltimore, Estats Units d'Amèrica))
Finlayson, Marcia (Queens University (Kingston, Canadà))
Hawton, Annie (University of Exeter (Regne Unit))
Lublin, Fred D. (Icahn School of Medicine at Mount Sinai (Nova York, Estats Units d'Amèrica))
Marrie, Ruth Ann (University of Manitoba (Winnipeg, Canadà))
Montalban, Xavier (Hospital Universitari Vall d'Hebron)
Sormani, Maria Pia (University of Genoa)
Strum, Jon (RealTalk MS (Long Beach, Estats Units d'Amèrica))
Vickrey, Barbara G. (Icahn School of Medicine at Mount Sinai (Nova York, Estats Units d'Amèrica))
Coetzee, Timothy (National Multiple Sclerosis Society (New York, Estats Units d'Amèrica))
Universitat Autònoma de Barcelona

Fecha:	2023
Resumen:	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.
Derechos:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Lengua:	Anglès
Documento:	Article ; recerca ; Versió publicada
Materia:	Multiple sclerosis ; Progression ; Relapses ; Clinical course ; Progressive multiple sclerosis ; Relapsing multiple sclerosis
Publicado en:	Multiple sclerosis, Vol. 29 (september 2023) , p. 1363-1372, ISSN 1477-0970

DOI: 10.1177/13524585231196786
PMID: 37691493

10 p, 1.6 MB

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