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 Spelman; Robert 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

doi:10.1177/1352458520941485

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 journal › Article › peer-review

49 Scopus citations

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 language	English
Pages (from-to)	1157-1162
Number of pages	6
Journal	Multiple Sclerosis Journal
Volume	26
Issue number	10
DOIs	https://doi.org/10.1177/1352458520941485
State	Published - Sep 1 2020

Keywords

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

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10.1177/1352458520941485

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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

@article{1a6207a77f13498584a036868ffe4fce,

title = "COVID-19 in people with multiple sclerosis: A global data sharing initiative",

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 = "COVID-19, Multiple sclerosis, coronavirus 2, data collection, humans, pandemics, registries",

author = "Peeters, {Liesbet M.} and Tina Parciak and Clare Walton and Lotte Geys and Yves Moreau and {De Brouwer}, Edward and Daniele Raimondi and Ashkan Pirmani and Tomas Kalincik and Gilles Edan and Steve Simpson-Yap and {De Raedt}, Luc and Yann Dauxais and Cl{\'e}ment Gautrais and Rodrigues, {Paulo R.} and Landon McKenna and Nikola Lazovski and Jan Hillert and Lars Forsberg and Tim Spelman and Robert McBurney and Hollie Schmidt and Arnfin Bergmann and Stefan Braune and Alexander Stahmann and Rodden Middleton and Amber Salter and Bebo, {Bruce F.} and Rojas, {Juan I.} and {van der Walt}, Anneke and Helmut Butzkueven and {van der Mei}, Ingrid and Rumen Ivanov and Kerstin Hellwig and {Sciascia do Olival}, Guilherme and Cohen, {Jeffrey A.} and {Van Hecke}, Wim and Ruth Dobson and Melinda Magyari and Brum, {Doralina Guimar{\~a}es} and Ricardo Alonso and Richard Nicholas and Johana Bauer and Anibal Chertcoff and {de S{\`e}ze}, J{\'e}r{\^o}me and C{\'e}line Louapre and Giancarlo Comi and Nick Rijke",

note = "Publisher Copyright: {\textcopyright} The Author(s), 2020.",

year = "2020",

month = sep,

day = "1",

doi = "10.1177/1352458520941485",

language = "English",

volume = "26",

pages = "1157--1162",

journal = "Multiple Sclerosis Journal",

issn = "1352-4585",

number = "10",

}

Peeters, LM, 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, PR, McKenna, L, Lazovski, N, Hillert, J, Forsberg, L, Spelman, T, McBurney, R, Schmidt, H, Bergmann, A, Braune, S, Stahmann, A, Middleton, R, Salter, A, Bebo, BF, Rojas, JI, van der Walt, A, Butzkueven, H, van der Mei, I, Ivanov, R, Hellwig, K, Sciascia do Olival, G, Cohen, JA, Van Hecke, W, Dobson, R, Magyari, M, Brum, DG, Alonso, R, Nicholas, R, Bauer, J, Chertcoff, A, de Sèze, J, Louapre, C, Comi, G & Rijke, N 2020, 'COVID-19 in people with multiple sclerosis: A global data sharing initiative', Multiple Sclerosis Journal, vol. 26, no. 10, pp. 1157-1162. https://doi.org/10.1177/1352458520941485

TY - JOUR

T1 - COVID-19 in people with multiple sclerosis

T2 - A global data sharing initiative

AU - Peeters, Liesbet M.

AU - Parciak, Tina

AU - Walton, Clare

AU - Geys, Lotte

AU - Moreau, Yves

AU - De Brouwer, Edward

AU - Raimondi, Daniele

AU - Pirmani, Ashkan

AU - Kalincik, Tomas

AU - Edan, Gilles

AU - Simpson-Yap, Steve

AU - De Raedt, Luc

AU - Dauxais, Yann

AU - Gautrais, Clément

AU - Rodrigues, Paulo R.

AU - McKenna, Landon

AU - Lazovski, Nikola

AU - Hillert, Jan

AU - Forsberg, Lars

AU - Spelman, Tim

AU - McBurney, Robert

AU - Schmidt, Hollie

AU - Bergmann, Arnfin

AU - Braune, Stefan

AU - Stahmann, Alexander

AU - Middleton, Rodden

AU - Salter, Amber

AU - Bebo, Bruce F.

AU - Rojas, Juan I.

AU - van der Walt, Anneke

AU - Butzkueven, Helmut

AU - van der Mei, Ingrid

AU - Ivanov, Rumen

AU - Hellwig, Kerstin

AU - Sciascia do Olival, Guilherme

AU - Cohen, Jeffrey A.

AU - Van Hecke, Wim

AU - Dobson, Ruth

AU - Magyari, Melinda

AU - Brum, Doralina Guimarães

AU - Alonso, Ricardo

AU - Nicholas, Richard

AU - Bauer, Johana

AU - Chertcoff, Anibal

AU - de Sèze, Jérôme

AU - Louapre, Céline

AU - Comi, Giancarlo

AU - Rijke, Nick

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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.

AB - 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.

KW - COVID-19

KW - Multiple sclerosis

KW - coronavirus 2

KW - data collection

KW - humans

KW - pandemics

KW - registries

UR - http://www.scopus.com/inward/record.url?scp=85087992743&partnerID=8YFLogxK

U2 - 10.1177/1352458520941485

DO - 10.1177/1352458520941485

M3 - Article

C2 - 32662757

AN - SCOPUS:85087992743

SN - 1352-4585

VL - 26

SP - 1157

EP - 1162

JO - Multiple Sclerosis Journal

JF - Multiple Sclerosis Journal

IS - 10

ER -

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

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