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

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 eff...

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Veröffentlicht in:Multiple sclerosis 2020-09, Vol.26 (10), p.1157-1162
Hauptverfasser: 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
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container_end_page 1162
container_issue 10
container_start_page 1157
container_title Multiple sclerosis
container_volume 26
creator 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
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.
doi_str_mv 10.1177/1352458520941485
format Article
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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. 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.</description><identifier>ISSN: 1352-4585</identifier><identifier>ISSN: 1477-0970</identifier><identifier>EISSN: 1477-0970</identifier><identifier>DOI: 10.1177/1352458520941485</identifier><identifier>PMID: 32662757</identifier><language>eng</language><publisher>London, England: SAGE Publications</publisher><subject>Betacoronavirus ; Coronavirus Infections - complications ; Coronavirus Infections - physiopathology ; Coronavirus Infections - therapy ; Coronaviruses ; COVID-19 ; Data Collection ; Datasets ; Future s ; Human health and pathology ; Humans ; Information Dissemination ; Information sharing ; International Cooperation ; Life Sciences ; Medicin och hälsovetenskap ; Multiple sclerosis ; Multiple Sclerosis - complications ; Multiple Sclerosis - therapy ; Pandemics ; Pneumonia, Viral - complications ; Pneumonia, Viral - physiopathology ; 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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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in people with multiple sclerosis: A global data sharing initiative</title><author>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, 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therapy</topic><topic>Pandemics</topic><topic>Pneumonia, Viral - complications</topic><topic>Pneumonia, Viral - physiopathology</topic><topic>Pneumonia, Viral - therapy</topic><topic>Registries</topic><topic>Risk Factors</topic><topic>SARS-CoV-2</topic><topic>Treatment Outcome</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Peeters, Liesbet M</creatorcontrib><creatorcontrib>Parciak, Tina</creatorcontrib><creatorcontrib>Walton, Clare</creatorcontrib><creatorcontrib>Geys, Lotte</creatorcontrib><creatorcontrib>Moreau, Yves</creatorcontrib><creatorcontrib>De Brouwer, Edward</creatorcontrib><creatorcontrib>Raimondi, Daniele</creatorcontrib><creatorcontrib>Pirmani, Ashkan</creatorcontrib><creatorcontrib>Kalincik, Tomas</creatorcontrib><creatorcontrib>Edan, Gilles</creatorcontrib><creatorcontrib>Simpson-Yap, Steve</creatorcontrib><creatorcontrib>De Raedt, Luc</creatorcontrib><creatorcontrib>Dauxais, Yann</creatorcontrib><creatorcontrib>Gautrais, Clément</creatorcontrib><creatorcontrib>Rodrigues, Paulo R</creatorcontrib><creatorcontrib>McKenna, Landon</creatorcontrib><creatorcontrib>Lazovski, Nikola</creatorcontrib><creatorcontrib>Hillert, Jan</creatorcontrib><creatorcontrib>Forsberg, Lars</creatorcontrib><creatorcontrib>Spelman, Tim</creatorcontrib><creatorcontrib>McBurney, Robert</creatorcontrib><creatorcontrib>Schmidt, Hollie</creatorcontrib><creatorcontrib>Bergmann, Arnfin</creatorcontrib><creatorcontrib>Braune, Stefan</creatorcontrib><creatorcontrib>Stahmann, Alexander</creatorcontrib><creatorcontrib>Middleton, Rodden</creatorcontrib><creatorcontrib>Salter, Amber</creatorcontrib><creatorcontrib>Bebo, Bruce F</creatorcontrib><creatorcontrib>Rojas, Juan I</creatorcontrib><creatorcontrib>van der Walt, Anneke</creatorcontrib><creatorcontrib>Butzkueven, Helmut</creatorcontrib><creatorcontrib>van der Mei, Ingrid</creatorcontrib><creatorcontrib>Ivanov, Rumen</creatorcontrib><creatorcontrib>Hellwig, Kerstin</creatorcontrib><creatorcontrib>Sciascia do Olival, Guilherme</creatorcontrib><creatorcontrib>Cohen, Jeffrey A</creatorcontrib><creatorcontrib>Van Hecke, Wim</creatorcontrib><creatorcontrib>Dobson, Ruth</creatorcontrib><creatorcontrib>Magyari, Melinda</creatorcontrib><creatorcontrib>Brum, Doralina Guimarães</creatorcontrib><creatorcontrib>Alonso, Ricardo</creatorcontrib><creatorcontrib>Nicholas, Richard</creatorcontrib><creatorcontrib>Bauer, Johana</creatorcontrib><creatorcontrib>Chertcoff, Anibal</creatorcontrib><creatorcontrib>de Sèze, Jérôme</creatorcontrib><creatorcontrib>Louapre, Céline</creatorcontrib><creatorcontrib>Comi, Giancarlo</creatorcontrib><creatorcontrib>Rijke, Nick</creatorcontrib><collection>Sage Journals GOLD Open Access 2024</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Immunology Abstracts</collection><collection>Neurosciences Abstracts</collection><collection>Virology and AIDS Abstracts</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health &amp; Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>Hyper Article en Ligne (HAL)</collection><collection>Hyper Article en Ligne (HAL) (Open Access)</collection><collection>PubMed Central (Full Participant titles)</collection><collection>SwePub</collection><collection>SwePub Articles</collection><collection>SWEPUB Freely available online</collection><collection>SwePub Articles full text</collection><jtitle>Multiple sclerosis</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Peeters, Liesbet M</au><au>Parciak, Tina</au><au>Walton, Clare</au><au>Geys, Lotte</au><au>Moreau, Yves</au><au>De Brouwer, Edward</au><au>Raimondi, Daniele</au><au>Pirmani, Ashkan</au><au>Kalincik, Tomas</au><au>Edan, Gilles</au><au>Simpson-Yap, Steve</au><au>De Raedt, Luc</au><au>Dauxais, Yann</au><au>Gautrais, Clément</au><au>Rodrigues, Paulo R</au><au>McKenna, Landon</au><au>Lazovski, Nikola</au><au>Hillert, Jan</au><au>Forsberg, Lars</au><au>Spelman, Tim</au><au>McBurney, Robert</au><au>Schmidt, Hollie</au><au>Bergmann, Arnfin</au><au>Braune, Stefan</au><au>Stahmann, Alexander</au><au>Middleton, Rodden</au><au>Salter, Amber</au><au>Bebo, Bruce F</au><au>Rojas, Juan I</au><au>van der Walt, Anneke</au><au>Butzkueven, Helmut</au><au>van der Mei, Ingrid</au><au>Ivanov, Rumen</au><au>Hellwig, Kerstin</au><au>Sciascia do Olival, Guilherme</au><au>Cohen, Jeffrey A</au><au>Van Hecke, Wim</au><au>Dobson, Ruth</au><au>Magyari, Melinda</au><au>Brum, Doralina Guimarães</au><au>Alonso, Ricardo</au><au>Nicholas, Richard</au><au>Bauer, Johana</au><au>Chertcoff, Anibal</au><au>de Sèze, Jérôme</au><au>Louapre, Céline</au><au>Comi, Giancarlo</au><au>Rijke, Nick</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>COVID-19 in people with multiple sclerosis: A global data sharing initiative</atitle><jtitle>Multiple sclerosis</jtitle><addtitle>Mult Scler</addtitle><date>2020-09-01</date><risdate>2020</risdate><volume>26</volume><issue>10</issue><spage>1157</spage><epage>1162</epage><pages>1157-1162</pages><issn>1352-4585</issn><issn>1477-0970</issn><eissn>1477-0970</eissn><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.</abstract><cop>London, England</cop><pub>SAGE Publications</pub><pmid>32662757</pmid><doi>10.1177/1352458520941485</doi><tpages>6</tpages><orcidid>https://orcid.org/0000-0002-2130-4420</orcidid><orcidid>https://orcid.org/0000-0001-6521-3056</orcidid><orcidid>https://orcid.org/0000-0003-4549-1002</orcidid><orcidid>https://orcid.org/0000-0001-9204-3216</orcidid><orcidid>https://orcid.org/0000-0002-1088-110X</orcidid><orcidid>https://orcid.org/0000-0002-2993-585X</orcidid><orcidid>https://orcid.org/0000-0001-8486-9616</orcidid><orcidid>https://orcid.org/0000-0002-4278-7003</orcidid><orcidid>https://orcid.org/0000-0001-9245-9772</orcidid><orcidid>https://orcid.org/0000-0002-6066-3899</orcidid><orcidid>https://orcid.org/0000-0002-4987-1531</orcidid><orcidid>https://orcid.org/0000-0002-7197-7578</orcidid><orcidid>https://orcid.org/0000-0003-0214-4617</orcidid><oa>free_for_read</oa></addata></record>
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identifier ISSN: 1352-4585
ispartof Multiple sclerosis, 2020-09, Vol.26 (10), p.1157-1162
issn 1352-4585
1477-0970
1477-0970
language eng
recordid cdi_swepub_primary_oai_swepub_ki_se_469758
source Access via SAGE; MEDLINE; SWEPUB Freely available online
subjects Betacoronavirus
Coronavirus Infections - complications
Coronavirus Infections - physiopathology
Coronavirus Infections - therapy
Coronaviruses
COVID-19
Data Collection
Datasets
Future s
Human health and pathology
Humans
Information Dissemination
Information sharing
International Cooperation
Life Sciences
Medicin och hälsovetenskap
Multiple sclerosis
Multiple Sclerosis - complications
Multiple Sclerosis - therapy
Pandemics
Pneumonia, Viral - complications
Pneumonia, Viral - physiopathology
Pneumonia, Viral - therapy
Registries
Risk Factors
SARS-CoV-2
Treatment Outcome
title COVID-19 in people with multiple sclerosis: A global data sharing initiative
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