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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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2020
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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. |
format | Online Article Text |
id | pubmed-7361123 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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