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

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

Multiple Sclerosis Journal, Volume: 26, Issue: 10, Pages: 1157 - 1162

Swansea University Author: Rod Middleton Orcid Logo

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DOI (Published version): 10.1177/1352458520941485

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 effort...

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Published in: Multiple Sclerosis Journal
ISSN: 1352-4585 1477-0970
Published: SAGE Publications 2020
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URI: https://cronfa.swan.ac.uk/Record/cronfa61475
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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&#x2009;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.</abstract><type>Journal Article</type><journal>Multiple Sclerosis Journal</journal><volume>26</volume><journalNumber>10</journalNumber><paginationStart>1157</paginationStart><paginationEnd>1162</paginationEnd><publisher>SAGE Publications</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>1352-4585</issnPrint><issnElectronic>1477-0970</issnElectronic><keywords>Multiple sclerosis, pandemics, COVID-19, data collection, registries, coronavirus 2, humans</keywords><publishedDay>1</publishedDay><publishedMonth>9</publishedMonth><publishedYear>2020</publishedYear><publishedDate>2020-09-01</publishedDate><doi>10.1177/1352458520941485</doi><url/><notes/><college>COLLEGE NANME</college><department>Health Data Science</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HDAT</DepartmentCode><institution>Swansea University</institution><apcterm/><funders>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.</funders><projectreference/><lastEdited>2022-10-21T10:37:13.5792331</lastEdited><Created>2022-10-07T11:54:35.4389315</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Medicine</level></path><authors><author><firstname>Liesbet M</firstname><surname>Peeters</surname><orcid>0000-0002-6066-3899</orcid><order>1</order></author><author><firstname>Tina</firstname><surname>Parciak</surname><order>2</order></author><author><firstname>Clare</firstname><surname>Walton</surname><order>3</order></author><author><firstname>Lotte</firstname><surname>Geys</surname><order>4</order></author><author><firstname>Yves</firstname><surname>Moreau</surname><order>5</order></author><author><firstname>Edward De</firstname><surname>Brouwer</surname><order>6</order></author><author><firstname>Daniele</firstname><surname>Raimondi</surname><order>7</order></author><author><firstname>Ashkan</firstname><surname>Pirmani</surname><orcid>0000-0003-4549-1002</orcid><order>8</order></author><author><firstname>Tomas</firstname><surname>Kalincik</surname><order>9</order></author><author><firstname>Gilles</firstname><surname>Edan</surname><order>10</order></author><author><firstname>Steve</firstname><surname>Simpson-Yap</surname><orcid>0000-0001-6521-3056</orcid><order>11</order></author><author><firstname>Luc De</firstname><surname>Raedt</surname><order>12</order></author><author><firstname>Yann</firstname><surname>Dauxais</surname><order>13</order></author><author><firstname>Cl&#xE9;ment</firstname><surname>Gautrais</surname><orcid>0000-0001-8486-9616</orcid><order>14</order></author><author><firstname>Paulo 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spelling 2022-10-21T10:37:13.5792331 v2 61475 2022-10-07 COVID-19 in people with multiple sclerosis: A global data sharing initiative 005518f819ef1a2a13fdf438529bdfcd 0000-0002-2130-4420 Rod Middleton Rod Middleton true false 2022-10-07 HDAT 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. Journal Article Multiple Sclerosis Journal 26 10 1157 1162 SAGE Publications 1352-4585 1477-0970 Multiple sclerosis, pandemics, COVID-19, data collection, registries, coronavirus 2, humans 1 9 2020 2020-09-01 10.1177/1352458520941485 COLLEGE NANME Health Data Science COLLEGE CODE HDAT Swansea University 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. 2022-10-21T10:37:13.5792331 2022-10-07T11:54:35.4389315 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Liesbet M Peeters 0000-0002-6066-3899 1 Tina Parciak 2 Clare Walton 3 Lotte Geys 4 Yves Moreau 5 Edward De Brouwer 6 Daniele Raimondi 7 Ashkan Pirmani 0000-0003-4549-1002 8 Tomas Kalincik 9 Gilles Edan 10 Steve Simpson-Yap 0000-0001-6521-3056 11 Luc De Raedt 12 Yann Dauxais 13 Clément Gautrais 0000-0001-8486-9616 14 Paulo R Rodrigues 15 Landon McKenna 16 Nikola Lazovski 17 Jan Hillert 18 Lars Forsberg 19 Tim Spelman 0000-0001-9204-3216 20 Robert McBurney 21 Hollie Schmidt 22 Arnfin Bergmann 23 Stefan Braune 24 Alexander Stahmann 25 Rod Middleton 0000-0002-2130-4420 26 Amber Salter 0000-0002-1088-110x 27 Bruce F Bebo 28 Juan I Rojas 29 Anneke van der Walt 0000-0002-4278-7003 30 Helmut Butzkueven 31 Ingrid van der Mei 32 Rumen Ivanov 33 Kerstin Hellwig 34 Guilherme Sciascia do Olival 35 Jeffrey A Cohen 0000-0001-9245-9772 36 Wim Van Hecke 37 Ruth Dobson 0000-0002-2993-585x 38 Melinda Magyari 39 Doralina Guimarães Brum 40 Ricardo Alonso 41 Richard Nicholas 42 Johana Bauer 43 Anibal Chertcoff 44 Jérôme de Sèze 45 Céline Louapre 46 Giancarlo Comi 47 Nick Rijke 48 61475__25541__59268a0411954580a0e96ad6212432cd.pdf 61475_VoR.pdf 2022-10-21T10:30:49.8432295 Output 545716 application/pdf Version of Record true © The Author(s), 2020. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License true eng https://creativecommons.org/licenses/by-nc/4.0/
title COVID-19 in people with multiple sclerosis: A global data sharing initiative
spellingShingle COVID-19 in people with multiple sclerosis: A global data sharing initiative
Rod Middleton
title_short COVID-19 in people with multiple sclerosis: A global data sharing initiative
title_full COVID-19 in people with multiple sclerosis: A global data sharing initiative
title_fullStr COVID-19 in people with multiple sclerosis: A global data sharing initiative
title_full_unstemmed COVID-19 in people with multiple sclerosis: A global data sharing initiative
title_sort COVID-19 in people with multiple sclerosis: A global data sharing initiative
author_id_str_mv 005518f819ef1a2a13fdf438529bdfcd
author_id_fullname_str_mv 005518f819ef1a2a13fdf438529bdfcd_***_Rod Middleton
author Rod Middleton
author2 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
Rod 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
format Journal article
container_title Multiple Sclerosis Journal
container_volume 26
container_issue 10
container_start_page 1157
publishDate 2020
institution Swansea University
issn 1352-4585
1477-0970
doi_str_mv 10.1177/1352458520941485
publisher SAGE Publications
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
document_store_str 1
active_str 0
description 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.
published_date 2020-09-01T04:20:18Z
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score 11.01628

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