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

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

Research output: Contribution to journalArticleResearchpeer-review

1 Citation (Scopus)

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.

Original languageEnglish
Pages (from-to)1157-1162
Number of pages6
JournalMultiple Sclerosis Journal
Volume26
Issue number10
DOIs
Publication statusPublished - Sep 2020

Keywords

  • coronavirus 2
  • COVID-19
  • data collection
  • humans
  • Multiple sclerosis
  • pandemics
  • registries

Cite this

Peeters, L. M., Parciak, T., Walton, C., Geys, L., Moreau, Y., De Brouwer, E., Raimondi, D., Pirmani, A., Kalincik, T., Edan, G., Simpson-Yap, S., De Raedt, L., Dauxais, Y., Gautrais, C., Rodrigues, P. R., McKenna, L., Lazovski, N., Hillert, J., Forsberg, L., ... Rijke, N. (2020). COVID-19 in people with multiple sclerosis: A global data sharing initiative. Multiple Sclerosis Journal, 26(10), 1157-1162. https://doi.org/10.1177/1352458520941485