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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,
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
,
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
Multiple Sclerosis Journal, Volume: 26, Issue: 10, Pages: 1157 - 1162
Swansea University Author:
Rod Middleton
-
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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...
| 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 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. 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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. 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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 MEDS 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 Medical School COLLEGE CODE MEDS Swansea University Another institution paid the OA fee 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. 2024-10-29T14:38:23.3490638 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 |
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1 |
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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 |
2020-09-01T14:38:21Z |
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1814259513783484416 |
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11.037166 |