The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care - updates at the 2023 plenary event

. 2024 ; 15 () : 1407257. [epub] 20240620

Status PubMed-not-MEDLINE Jazyk angličtina Země Švýcarsko Médium electronic-ecollection

Typ dokumentu časopisecké články, přehledy

Perzistentní odkaz   https://www.medvik.cz/link/pmid38974689

Significant advancements have been achieved in delineating the progress of the Global PROMS (PROMS) Initiative. The PROMS Initiative, a collaborative endeavor by the European Charcot Foundation and the Multiple Sclerosis International Federation, strives to amplify the influence of patient input on MS care and establish a cohesive perspective on Patient-Reported Outcomes (PROs) for diverse stakeholders. This initiative has established an expansive, participatory governance framework launching four dedicated working groups that have made substantive contributions to research, clinical management, eHealth, and healthcare system reform. The initiative prioritizes the global integration of patient (For the purposes of the Global PROMS Initiative, the term "patient" refers to the people with the disease (aka People with Multiple Sclerosis - pwMS): any individual with lived experience of the disease. People affected by the disease/Multiple Sclerosis: any individual or group that is affected by the disease: E.g., family members, caregivers will be also engaged as the other stakeholders in the initiative). insights into the management of MS care. It merges subjective PROs with objective clinical metrics, thereby addressing the complex variability of disease presentation and progression. Following the completion of its second phase, the initiative aims to help increasing the uptake of eHealth tools and passive PROs within research and clinical settings, affirming its unwavering dedication to the progressive refinement of MS care. Looking forward, the initiative is poised to continue enhancing global surveys, rethinking to the relevant statistical approaches in clinical trials, and cultivating a unified stance among 'industry', regulatory bodies and health policy making regarding the application of PROs in MS healthcare strategies.

Accelerated Cure Project Waltham MA United States

Ad Scientiam Paris Île de France France

Brain and Mind Center University of Sydney Camperdown NSW Australia

Charité Universitätsmedizin Berlin Corporate Member of Freie Universität Berlin and Humboldt Universität zu Berlin Experimental and Clinical Research Center Berlin Germany

Department of Biostatistics School of Public Health The University of Alabama at Birmingham Birmingham AL United States

Department of Clinical Neuroscience Neurogenetics Multiple Sclerosis Karolinska Institutet Stockholm Sweden

Department of Health Sciences University of Genoa Genoa Italy

Department of Life Science University of Siena Siena Italy

Department of Neurology Bursa Faculty of Medicine Bursa Yüksek İhtisas Training and Research Hospital University of Health Sciences Bursa Türkiye

Department of Neurology Icahn School of Medicine at Mount Sinai New York NY United States

Department of Neurology Medical University of Vienna Vienna Austria

Department of Neurology Palacky University Olomouc Olomouc Czechia

Department of Neurology Sakarya University Faculty of Medicine Sakarya Türkiye

Department of Neurology The Center for Neurological Research Næstved Slagelse Ringsted Hospitals Slagelse Denmark

Department of Neurology UKD Medical Faculty Heinrich Heine Universitat Düsseldorf Düsseldorf Germany

Department of Rehabilitation Sciences Casa di Cura Igea Milan Italy

European Medicines Agency Public and Stakeholder Engagement Department Amsterdam North Holland Netherlands

European MS Platform Brussels Belgium

Faculty of Medicine Health and Life Sciences Swansea University Swansea United Kingdom

Hasselt University Biomedical Research Institute Hasselt Belgium

Hoffmann La Roche Basel Switzerland

Hopital Vall d'Hebron Universitat Autonoma de Barcelona Barcelona Spain

Institute for Healthcare Policy KU Leuven Leuven Belgium

Institute of Regional Health Research and Molecular Medicine University of Southern Denmark Odense Denmark

Merck KGaA Darmstadt Germany

MS Lëtzebuerg Luxembourg Belgium

Multiple Sclerosis International Federation London United Kingdom

Multiple Sclerosis Society UK London United Kingdom

Multiple Sclerosis South Africa Hermanus Western Cape South Africa

National Multiple Sclerosis Society New York NY United States

Neurology Department Pitié Salpêtrière Hospital APHP Paris France

Plymouth University Peninsula Schools of Medicine and Dentistry Devon Plymouth United Kingdom

Programa de Pós Graduação Stricto Senso em Neurologia Department of Neurology Fluminense Federal University Niterói Brazil

Research Centre on Public Health University of Milan Bicocca Milan Italy

Research Department Italian Multiple Sclerosis Foundation Genoa Italy

Sorbonne Université Paris Brain Institute ICM CNRS Inserm Paris France

Université de Lille Inserm LilNCog CHU Lille FHU Precise Lille France

University of California San Francisco San Francisco CA United States

University Vita Salute San Raffaele Milan Italy

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