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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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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7361123/
https://www.ncbi.nlm.nih.gov/pubmed/32662757
http://dx.doi.org/10.1177/1352458520941485
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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, Nick
author_facet 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
author_sort Peeters, Liesbet M
collection PubMed
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.
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spelling pubmed-73611232020-07-15 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 Mult Scler Future Perspectives 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. SAGE Publications 2020-07-14 2020-09 /pmc/articles/PMC7361123/ /pubmed/32662757 http://dx.doi.org/10.1177/1352458520941485 Text en © The Author(s), 2020 https://creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Future Perspectives
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
title 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_short 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
topic Future Perspectives
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7361123/
https://www.ncbi.nlm.nih.gov/pubmed/32662757
http://dx.doi.org/10.1177/1352458520941485
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