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

Liesbet M Peeters Orcid Logo, Tina Parciak, Clare Walton, Lotte Geys, Yves Moreau, Edward De Brouwer, Daniele Raimondi, Ashkan Pirmani Orcid Logo, Tomas Kalincik, Gilles Edan, Steve Simpson-Yap Orcid Logo, Luc De Raedt, Yann Dauxais, Clément Gautrais Orcid Logo, Paulo R Rodrigues, Landon McKenna, Nikola Lazovski, Jan Hillert, Lars Forsberg, Tim Spelman Orcid Logo, Robert McBurney, Hollie Schmidt, Arnfin Bergmann, Stefan Braune, Alexander Stahmann, Rod Middleton Orcid Logo, Amber Salter Orcid Logo, Bruce F Bebo, Juan I Rojas, Anneke van der Walt Orcid Logo, Helmut Butzkueven, Ingrid van der Mei, Rumen Ivanov, Kerstin Hellwig, Guilherme Sciascia do Olival, Jeffrey A Cohen Orcid Logo, Wim Van Hecke, Ruth Dobson Orcid Logo, Melinda Magyari, Doralina Guimarães Brum, Ricardo Alonso, Richard Nicholas, Johana Bauer, Anibal Chertcoff, Jérôme de Sèze, Céline Louapre, Giancarlo Comi, Nick Rijke

Multiple Sclerosis Journal, Volume: 26, Issue: 10, Pages: 1157 - 1162

Swansea University Author: Rod Middleton Orcid Logo

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Abstract

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 effort...

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Published in: Multiple Sclerosis Journal
ISSN: 1352-4585 1477-0970
Published: SAGE Publications 2020
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa61475
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Abstract: 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.
Keywords: Multiple sclerosis, pandemics, COVID-19, data collection, registries, coronavirus 2, humans
College: Faculty of Medicine, Health and Life Sciences
Funders: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The operational costs linked to this study are funded by the Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA), acting under the umbrella of the European Charcot Foundation (ECF). The MSDA receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Canopy Growth Corporation, Genzyme, Icometrix, Merck, Mylan, Novartis, QMENTA, Quanterix and Roche. MSIF receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche.
Issue: 10
Start Page: 1157
End Page: 1162