COVID-19 in people with multiple sclerosis: A global data sharing initiative. (September 2020)

• Record Type: Journal Article
• Authors: Peeters, Liesbet M; Parciak, Tina; Walton, Clare; Geys, Lotte; Moreau, Yves; De Brouwer, Edward; Raimondi, Daniele; Pirmani, Ashkan; Kalincik, Tomas; Edan, Gilles; Simpson-Yap, Steve; De Raedt, Luc; Dauxais, Yann; Gautrais, Clément; Rodrigues, Paulo R; McKenna, Landon; Lazovski, Nikola; Hillert, Jan; Forsberg, Lars; Spelman, Tim; 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; Sciascia do Olival, Guilherme; Cohen, Jeffrey A; Van Hecke, Wim; Dobson, Ruth; Magyari, Melinda; Brum, Doralina Guimarães; Alonso, Ricardo; Nicholas, Richard; Bauer, Johana; Chertcoff, Anibal; de Sèze, Jérôme; Louapre, Céline; Comi, Giancarlo; Rijke, Nick;
• Is Part Of: Multiple sclerosis. Volume 26:Number 10(2020)
• Page Start: 1157
• Page End: 1162
• Publication Date: 2020-09
• Subjects: Multiple sclerosis -- pandemics -- COVID-19 -- data collection -- registries -- coronavirus 2 -- humans; Central nervous system -- Diseases -- Periodicals; Myelin sheath -- Diseases -- Periodicals; Inflammation -- Periodicals; Multiple sclerosis -- Periodicals; Central Nervous System Diseases -- Periodicals; Demyelinating Diseases -- Periodicals; Inflammation -- Periodicals; Multiple Sclerosis -- Periodicals; Système nerveux central -- Maladies -- Périodiques; Gaine de myéline -- Maladies -- Périodiques; Inflammation (Pathologie) -- Périodiques; Sclérose en plaques -- Périodiques; Electronic journals; 616.834005
• DOI: 10.1177/1352458520941485
• Languages: English
• ISSNs: 1352-4585

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.