Sistema de Salut de Catalunya
Institut Català de la Salut
[Thompson AJ] 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. [Moccia M] Department of Molecular Biology and Molecular Biotechnology, Federico II University of Naples, Naples, Italy Multiple Sclerosis Unit, Policlinico Federico II University Hospital, Naples, Italy. [Amato MP] Department NEUROFARBA, Section of Neurosciences, University of Florence, Florence, Italy IRCCS Fondazione Don Carlo Gnocchi, Florence, Italy. [Calabresi PA] Department of Neurology and The Solomon H. Snyder Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, MD, USA. [Finlayson M] School of Rehabilitation Therapy, Queens University, Kingston, ON, Canada. [Hawton A] University of Exeter Medical School, University of Exeter, Exeter, UK. [Montalban X] Servei de Neurologia-Neuroimmunologia, Centre d’Esclerosi Múltiple de Catalunya (CEMCAT), Barcelona, Spain. Vall d’Hebron Hospital Universitari, Barcelona, Spain. Universitat Autònoma de Barcelona, Bellaterra, Spain
Vall d'Hebron Barcelona Hospital Campus
2023-10-18T07:35:20Z
2023-10-18T07:35:20Z
2023-10
Multiple sclerosis; Clinical course; Progression
Esclerosis múltiple; Curso clínico; Progresión
Esclerosi múltiple; Curs clínic; Progressió
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.
This work and the International Advisory Committee on Clinical Trials in MS are funded by the European Committee for Treatment and Research in Multiple Sclerosis and the National Multiple Sclerosis Society.
Article
Published version
English
Esclerosi múltiple; Enquestes; Imatgeria per ressonància magnètica; DISEASES::Nervous System Diseases::Autoimmune Diseases of the Nervous System::Demyelinating Autoimmune Diseases, CNS::Multiple Sclerosis; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Surveys and Questionnaires; ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Diagnosis::Diagnostic Techniques and Procedures::Diagnostic Imaging::Tomography::Magnetic Resonance Imaging; ENFERMEDADES::enfermedades del sistema nervioso::enfermedades autoinmunitarias del sistema nervioso::enfermedades autoinmunes desmielinizantes del SNC::esclerosis múltiple; TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::encuestas y cuestionarios; TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::diagnóstico::técnicas y procedimientos diagnósticos::diagnóstico por imagen::tomografía::imagen por resonancia magnética
SAGE Publications
Multiple Sclerosis Journal;29(11-12)
https://doi.org/10.1177/13524585231196786
Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
Articles científics - CEMCAT [136]
Articles científics - HVH [3396]
