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The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care - updates at the 2023 plenary event
P. Zaratin, S. Samadzadeh, M. Seferoğlu, V. Ricigliano, J. Dos Santos Silva, A. Tunc, G. Brichetto, T. Coetzee, A. Helme, U. Khan, R. McBurney, G. Peryer, H. Weiland, P. Baneke, MA. Battaglia, V. Block, L. Capezzuto, L. Carment, PA. Cortesi, G....
Status neindexováno Jazyk angličtina Země Švýcarsko
Typ dokumentu časopisecké články, přehledy
NLK
Directory of Open Access Journals
od 2010
Free Medical Journals
od 2010
PubMed Central
od 2010
Europe PubMed Central
od 2010
Open Access Digital Library
od 2010-01-01
Open Access Digital Library
od 2010-01-01
ROAD: Directory of Open Access Scholarly Resources
od 2010
- Publikační typ
- časopisecké články MeSH
- přehledy MeSH
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
Department of Health Sciences University of Genoa Genoa Italy
Department of Life Science University of Siena Siena Italy
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 UKD Medical Faculty Heinrich Heine Universitat Düsseldorf Düsseldorf Germany
Department of Rehabilitation Sciences Casa di Cura Igea Milan Italy
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
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
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
Citace poskytuje Crossref.org
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