COVID-19 in people with multiple sclerosis: A global data sharing initiative

Made available in DSpace on 2020-12-12T02:15:20Z (GMT). No. of bitstreams: 0 Previous issue date: 2020-09-01 Multiple Sclerosis International Federation Background: We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale. Objectives: Our mission is to scale-up COVID-19 data collection efforts and provide the MS community with data-driven insights as soon as possible. Methods: Numerous stakeholders were brought together. Small dedicated interdisciplinary task forces were created to speed-up the formulation of the study design and work plan. First step was to agree upon a COVID-19 MS core data set. Second, we worked on providing a user-friendly and rapid pipeline to share COVID-19 data at a global scale. Results: The COVID-19 MS core data set was agreed within 48 hours. To date, 23 data collection partners are involved and the first data imports have been performed successfully. Data processing and analysis is an on-going process. Conclusions: We reached a consensus on a core data set and established data sharing processes with multiple partners to address an urgent need for information to guide clinical practice. First results show that partners are motivated to share data to attain the ultimate joint goal: better understand the effect of COVID-19 in PwMS. Biomedical Research Institute and Data Science Institute Hasselt University Department of Medical Informatics University Medical Center Göttingen MS International Federation ESAT-STADIUS KU Leuven Biomedical Research Institute and Data Science Institute Hasselt University Diepenbeek Belgium/ESAT-STADIUS KU Leuven Clinical Outcomes Research (CORe) Unit The University of Melbourne Department of Neurology CHU Pontchaillou Neuroepidemiology Unit Melbourne School of Population Global Health The University of Melbourne Department of Computer Science and Leuven.AI KU Leuven QMENTA Department of Clinical Neuroscience Swedish MS Registry iConquerMS People-Powered Research Network Accelerated Cure Project for MS NeuroTransData Study Group NeuroTransData MS Forschungs- und Projektentwicklungs-gGmbH UK MS Register COViMS St Louis USA/ Division of Biostatistics Washington University in St. Louis COViMS USA/National Multiple Sclerosis Society Neurology Department Hospital Universitario de CEMIC MSBase Registry Department of Neuroscience Central Clinical School Monash University The Australian MS Longitudinal Study (AMSLS) Menzies Institute for Medical Research University of Tasmania Bulgarian SmartMS COVID-19 Dataset LEOSS Department of Neurology Katholisches Klinikum Bochum Brazilian Multiple Sclerosis Association (ABEM) Cleveland Clinic MS COVID-19 Registry Mellen MS Center Cleveland Clinic Icometrix – Icompanion OptimiseMS Preventive Neurology Unit Queen Mary University of London The Danish Multiple Sclerosis Registry Department of Neurology University Hospital Rigshospitalet Universidade Estadual Paulista (Unesp) Faculdade de Medicina Botucatu/REDONE – Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders RELACOEM Mental Health Area EMA MS and Demyelinating Diseases Hospital Británico de Buenos Aires – EMA Department of Neurology Strasbourg University Hospital COVISEP Institute of Experimental Neurology Ospedale San Raffaele Melbourne MS Centre Department of Neurology Royal Melbourne Hospital Institut du Cerveau ICM APHP – Hôpital Pitié Salpêtrière Sorbonne University Menzies Institute for Medical Research University of Tasmania Imperial College London Swansea University Multiple Sclerosis University Center Ramos Mejia Hospital – EMA Universidade Estadual Paulista (Unesp) Faculdade de Medicina Botucatu/REDONE – Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders