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Title: | COVID-19 in people with multiple sclerosis: A global data sharing initiative | Authors: | PEETERS, Liesbet PARCIAK, Tina Walton, Clare GEYS, Lotte Moreau, Yves DE BROUWER, Edward Raimondi, Daniele PIRMANI, Ashkan Kalincik, Tomas Edan, Gilles Simpson-Yap, Steve DE RAEDT, Sylvie Dauxais, Yann Gautrais, Clement Rodrigues, Paulo R. McKenna, Landon Lazovski, Nikola Hillert, Jan Forsberg, Lars SPELMANS, Nele McBurney, Robert Schmidt, Hollie Bergmann, Arnfin Braune, Stefan Stahmann, Alexander Middleton, Rodden Salter, Amber Bebo, Bruce F. Rojas, Juan, I van der Walt, Anneke Butzkueven, Helmut van der Mei, Ingrid Ivanov, Rumen Hellwig, Kerstin do Olival, Guilherme Sciascia Cohen, Jeffrey A. Van Hecke, Wim Dobson, Ruth Magyari, Melinda Brum, Doralina Guimaraes Alonso, Ricardo Nicholas, Richard Bauer, Johana Chertcoff, Anibal de Seze, Jerome Louapre, Celine Comi, Giancarlo Rijke, Nick |
Issue Date: | 2020 | Publisher: | SAGE PUBLICATIONS LTD | Source: | MULTIPLE SCLEROSIS JOURNAL, 26 (10) , p. 1157 -1162 | 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. | Notes: | Peeters, LM (corresponding author), Hasselt Univ, Biomed Res Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium.; Peeters, LM (corresponding author), Hasselt Univ, Data Sci Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium. liesbet.peeters@uhasselt.be |
Other: | Peeters, LM (corresponding author), Hasselt Univ, Biomed Res Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium; Hasselt Univ, Data Sci Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium. liesbet.peeters@uhasselt.be | Keywords: | Multiple sclerosis;pandemics;COVID-19;data collection;registries;coronavirus 2;humans | Document URI: | http://hdl.handle.net/1942/32545 | ISSN: | 1352-4585 | e-ISSN: | 1477-0970 | DOI: | 10.1177/1352458520941485 | ISI #: | WOS:000548876400001 | Rights: | The Author(s), 2020. Article reuse guidelines: CC-BY-NC sagepub.com/journalspermissions | Category: | A1 | Type: | Journal Contribution | Validations: | ecoom 2021 |
Appears in Collections: | Research publications |
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