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

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 (US)
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
Externally published	Yes

Keywords

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

ASJC Scopus subject areas

Neurology
Clinical Neurology

Access to Document

10.1177/1352458520941485

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

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

In: Multiple Sclerosis Journal, Vol. 26, No. 10, 01.09.2020, p. 1157-1162.

Research output: Contribution to journal › Article › peer-review

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

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. / COVID-19 in people with multiple sclerosis : A global data sharing initiative. In: Multiple Sclerosis Journal. 2020 ; Vol. 26, No. 10. pp. 1157-1162.

@article{9027ad314c50420d9bafe2251f13d56e,

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 = "Funding Information: 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. Funding Information: We would like to thank the sponsors of the Multiple Sclerosis Data Alliance and the Multiple Sclerosis International Federation for providing financial support. Special thanks goes to QMENTA for kindly providing us with the central platform. The authors thank everyone who actively participated in any of the global teleconferences, brainstorms and task force meetings. We would like to thank all the PwMS and healthcare professionals who already contributed to the different data collection efforts. We also want to thank Jan Samyn, Margo Heremans, Angela Hooper, Jorina Nickmans, Gunther Meyer and Victoria Gilbert to support us with ensuring the operational power we needed to speed-up our progress. 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. Funding Information: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: L.M.P. has no personal pecuniary interests to disclose, other than being the chair of The MS Data Alliance (MSDA), which 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. C.W. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. T.K. served on scientific advisory boards for Roche, Sanofi-Genzyme, Novartis, Merck and Biogen, steering committee for Brain Atrophy Initiative by Sanofi-Genzyme; received conference travel support and/or speaker honoraria from WebMD Global, Novartis, Biogen, Sanofi-Genzyme, Teva, BioCSL and Merck; and received research support from Biogen. G.E. has received consulting/speaking fees/research support from Bayer, Novartis, Teva, Sanofi-Genzyme, Merck-Serono, Biogen Idec and Roche. P.R.R. is shareholder, employee and member of board of directors of QMENTA. J.H. has received honoraria for serving on advisory boards for Biogen, Celgene, Sanofi-Genzyme, Merck KGaA, Novartis and Sandoz and speaker{\textquoteright}s fees from Biogen, Novartis, Merck KGaA, Teva and Sanofi-Genzyme. He has served as P.I. for projects or received unrestricted research support from Biogen, Celgene, Merck KGaA, Novartis, Roche and Sanofi-Genzyme. His MS research was funded by the Swedish Research Council and the Swedish Brain foundation. Accelerated Cure Project for MS (ACP) has received grants, collaboration funding, payments for use of assets or in-kind contributions from the following companies: EMD Serono, Sanofi-Genzyme, Biogen, Genentech, AbbVie, Octave, GlycoMinds, Pfizer, Med-Day, AstraZeneca, Teva, Mallinckrodt, MSDx, Regeneron Genetics Centre, BC Platforms and Celgene. ACP has also received funding from the Patient-Centred Outcomes Research Institute (PCORI) and the National MS Society (NMSS). R.M. has received consulting payments from EMD Serono, which have been donated to ACP. A.B. has received consulting fees from advisory board/speaker/other activities for NeuroTransData and project management/clinical studies and travel expenses from Novartis and Servier. A.S. has no personal pecuniary interests to disclose, other than being the lead of the German MS Registry, which receives funding from a range of public and corporate sponsors, recently including The German Innovation Fund (G-BA), The German MS Trust, Biogen, German MS Society, Celgene (BMS), Merck and Novartis. A.S. is statistical editor for Circulation: Cardiovascular Imaging. J.I.R. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina and Novartis Argentina. A.v.d.W. has received honoraria and unrestricted research funding from Novartis, Biogen, Roche, Merck and Sanofi. H.B. Institution has received honoraria for steering committee activities, advisory board and meeting activities from Roche, Biogen, Novartis and Merck. H.B. has received consulting fees from Finstat (IQVIA) and Oxford Health policy Forum. J.A.C. has received personal compensation for consulting for Adamas, Convelo, Med-Day, Mylan and Population Council and is serving as an Editor of Multiple Sclerosis Journal. W.V.H. is shareholder, employee and member of board of directors of Icometrix. OPTIMISEMS has received funding from Biogen, Merck and Celgene. R.D. has received honoraria from Biogen, Merck and Teva. M.M. has served on scientific advisory board for Biogen, Sanofi, Roche, Novartis, Merck and AbbVie; received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi-Genzyme; and received research support and support for congress participation from Biogen, Genzyme, Roche, Merck and Novartis. R.A. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina, Biogen Argentina, Genzyme Argentina, Roche Argentina and Novartis Argentina. R.N. has received honoraria from Novartis, Roche and Biogen for advisory boards. J.d.S. has received Honoraria from Biogen, Roche, Genzyme, Celgene, Alexion and Novartis. C.L. has received consulting or travel fees from Biogen, Novartis, Roche, Sanofi, Teva and Merck-Serono. G.C. has received consulting and speaking fees from Novartis, Teva Pharmaceutical Industries Ltd, Teva Italia Srl, Sanofi-Genzyme Corporation, Genzyme Europe, Merck KGgA, Merck-Serono SpA, Celgene Group, Biogen Idec, Biogen Italia Srl, F. Hoffman-La Roche, Roche SpA, Almirall SpA, Forward Pharma, Med-Day and Excemed. N.R. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. RMM has reviewed no personal funding from any sources, the UK MS Register is funded by the MS Society and has received funding for specific projects from Novartis, Sanofi-Genzyme and Merck KGaA. T.P., L.G., Y.M., E.D.B., D.R., A.P., S.S.-Y., L.D.R., Y.D., C.G., L.M., N.L., L.F., T.S., S.B., B.F.B., I.v.d.M., R.I., K.H., G.S.d.O., D.G.B., J.B. and A.C. report no disclosures. Publisher Copyright: {\textcopyright} The Author(s), 2020.",

year = "2020",

month = sep,

day = "1",

doi = "10.1177/1352458520941485",

language = "English (US)",

volume = "26",

pages = "1157--1162",

journal = "Multiple Sclerosis",

issn = "1352-4585",

publisher = "SAGE Publications Ltd",

number = "10",

}

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

N1 - Funding Information: 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. Funding Information: We would like to thank the sponsors of the Multiple Sclerosis Data Alliance and the Multiple Sclerosis International Federation for providing financial support. Special thanks goes to QMENTA for kindly providing us with the central platform. The authors thank everyone who actively participated in any of the global teleconferences, brainstorms and task force meetings. We would like to thank all the PwMS and healthcare professionals who already contributed to the different data collection efforts. We also want to thank Jan Samyn, Margo Heremans, Angela Hooper, Jorina Nickmans, Gunther Meyer and Victoria Gilbert to support us with ensuring the operational power we needed to speed-up our progress. 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. Funding Information: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: L.M.P. has no personal pecuniary interests to disclose, other than being the chair of The MS Data Alliance (MSDA), which 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. C.W. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. T.K. served on scientific advisory boards for Roche, Sanofi-Genzyme, Novartis, Merck and Biogen, steering committee for Brain Atrophy Initiative by Sanofi-Genzyme; received conference travel support and/or speaker honoraria from WebMD Global, Novartis, Biogen, Sanofi-Genzyme, Teva, BioCSL and Merck; and received research support from Biogen. G.E. has received consulting/speaking fees/research support from Bayer, Novartis, Teva, Sanofi-Genzyme, Merck-Serono, Biogen Idec and Roche. P.R.R. is shareholder, employee and member of board of directors of QMENTA. J.H. has received honoraria for serving on advisory boards for Biogen, Celgene, Sanofi-Genzyme, Merck KGaA, Novartis and Sandoz and speaker’s fees from Biogen, Novartis, Merck KGaA, Teva and Sanofi-Genzyme. He has served as P.I. for projects or received unrestricted research support from Biogen, Celgene, Merck KGaA, Novartis, Roche and Sanofi-Genzyme. His MS research was funded by the Swedish Research Council and the Swedish Brain foundation. Accelerated Cure Project for MS (ACP) has received grants, collaboration funding, payments for use of assets or in-kind contributions from the following companies: EMD Serono, Sanofi-Genzyme, Biogen, Genentech, AbbVie, Octave, GlycoMinds, Pfizer, Med-Day, AstraZeneca, Teva, Mallinckrodt, MSDx, Regeneron Genetics Centre, BC Platforms and Celgene. ACP has also received funding from the Patient-Centred Outcomes Research Institute (PCORI) and the National MS Society (NMSS). R.M. has received consulting payments from EMD Serono, which have been donated to ACP. A.B. has received consulting fees from advisory board/speaker/other activities for NeuroTransData and project management/clinical studies and travel expenses from Novartis and Servier. A.S. has no personal pecuniary interests to disclose, other than being the lead of the German MS Registry, which receives funding from a range of public and corporate sponsors, recently including The German Innovation Fund (G-BA), The German MS Trust, Biogen, German MS Society, Celgene (BMS), Merck and Novartis. A.S. is statistical editor for Circulation: Cardiovascular Imaging. J.I.R. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina and Novartis Argentina. A.v.d.W. has received honoraria and unrestricted research funding from Novartis, Biogen, Roche, Merck and Sanofi. H.B. Institution has received honoraria for steering committee activities, advisory board and meeting activities from Roche, Biogen, Novartis and Merck. H.B. has received consulting fees from Finstat (IQVIA) and Oxford Health policy Forum. J.A.C. has received personal compensation for consulting for Adamas, Convelo, Med-Day, Mylan and Population Council and is serving as an Editor of Multiple Sclerosis Journal. W.V.H. is shareholder, employee and member of board of directors of Icometrix. OPTIMISEMS has received funding from Biogen, Merck and Celgene. R.D. has received honoraria from Biogen, Merck and Teva. M.M. has served on scientific advisory board for Biogen, Sanofi, Roche, Novartis, Merck and AbbVie; received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi-Genzyme; and received research support and support for congress participation from Biogen, Genzyme, Roche, Merck and Novartis. R.A. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina, Biogen Argentina, Genzyme Argentina, Roche Argentina and Novartis Argentina. R.N. has received honoraria from Novartis, Roche and Biogen for advisory boards. J.d.S. has received Honoraria from Biogen, Roche, Genzyme, Celgene, Alexion and Novartis. C.L. has received consulting or travel fees from Biogen, Novartis, Roche, Sanofi, Teva and Merck-Serono. G.C. has received consulting and speaking fees from Novartis, Teva Pharmaceutical Industries Ltd, Teva Italia Srl, Sanofi-Genzyme Corporation, Genzyme Europe, Merck KGgA, Merck-Serono SpA, Celgene Group, Biogen Idec, Biogen Italia Srl, F. Hoffman-La Roche, Roche SpA, Almirall SpA, Forward Pharma, Med-Day and Excemed. N.R. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. RMM has reviewed no personal funding from any sources, the UK MS Register is funded by the MS Society and has received funding for specific projects from Novartis, Sanofi-Genzyme and Merck KGaA. T.P., L.G., Y.M., E.D.B., D.R., A.P., S.S.-Y., L.D.R., Y.D., C.G., L.M., N.L., L.F., T.S., S.B., B.F.B., I.v.d.M., R.I., K.H., G.S.d.O., D.G.B., J.B. and A.C. report no disclosures. Publisher Copyright: © The Author(s), 2020.

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

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

U2 - 10.1177/1352458520941485

DO - 10.1177/1352458520941485

M3 - Article

C2 - 32662757

AN - SCOPUS:85087992743

VL - 26

SP - 1157

EP - 1162

JO - Multiple Sclerosis

JF - Multiple Sclerosis

SN - 1352-4585

IS - 10

ER -

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

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