COVID-19 in people with multiple sclerosis: A global data sharing initiative
Autor(a) principal: | |
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Data de Publicação: | 2020 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Institucional da UNESP |
Texto Completo: | http://dx.doi.org/10.1177/1352458520941485 http://hdl.handle.net/11449/200762 |
Resumo: | 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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COVID-19 in people with multiple sclerosis: A global data sharing initiativecoronavirus 2COVID-19data collectionhumansMultiple sclerosispandemicsregistriesBackground: 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.Multiple Sclerosis International FederationBiomedical Research Institute and Data Science Institute Hasselt UniversityDepartment of Medical Informatics University Medical Center GöttingenMS International FederationESAT-STADIUS KU LeuvenBiomedical Research Institute and Data Science Institute Hasselt University Diepenbeek Belgium/ESAT-STADIUS KU LeuvenClinical Outcomes Research (CORe) Unit The University of MelbourneDepartment of Neurology CHU PontchaillouNeuroepidemiology Unit Melbourne School of Population Global Health The University of MelbourneDepartment of Computer Science and Leuven.AI KU LeuvenQMENTADepartment of Clinical Neuroscience Swedish MS RegistryiConquerMS People-Powered Research Network Accelerated Cure Project for MSNeuroTransData Study Group NeuroTransDataMS Forschungs- und Projektentwicklungs-gGmbHUK MS RegisterCOViMS St Louis USA/ Division of Biostatistics Washington University in St. LouisCOViMS USA/National Multiple Sclerosis SocietyNeurology Department Hospital Universitario de CEMICMSBase Registry Department of Neuroscience Central Clinical School Monash UniversityThe Australian MS Longitudinal Study (AMSLS) Menzies Institute for Medical Research University of TasmaniaBulgarian SmartMS COVID-19 DatasetLEOSS Department of Neurology Katholisches Klinikum BochumBrazilian Multiple Sclerosis Association (ABEM)Cleveland Clinic MS COVID-19 Registry Mellen MS Center Cleveland ClinicIcometrix – IcompanionOptimiseMS Preventive Neurology Unit Queen Mary University of LondonThe Danish Multiple Sclerosis Registry Department of Neurology University Hospital RigshospitaletUniversidade Estadual Paulista (Unesp) Faculdade de Medicina Botucatu/REDONE – Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum DisordersRELACOEMMental Health Area EMAMS and Demyelinating Diseases Hospital Británico de Buenos Aires – EMADepartment of Neurology Strasbourg University HospitalCOVISEPInstitute of Experimental Neurology Ospedale San RaffaeleMelbourne MS Centre Department of Neurology Royal Melbourne HospitalInstitut du Cerveau ICM APHP – Hôpital Pitié Salpêtrière Sorbonne UniversityMenzies Institute for Medical Research University of TasmaniaImperial College LondonSwansea UniversityMultiple Sclerosis University Center Ramos Mejia Hospital – EMAUniversidade Estadual Paulista (Unesp) Faculdade de Medicina Botucatu/REDONE – Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum DisordersHasselt UniversityUniversity Medical Center GöttingenMS International FederationKU LeuvenThe University of MelbourneCHU PontchaillouQMENTASwedish MS RegistryAccelerated Cure Project for MSNeuroTransDataMS Forschungs- und Projektentwicklungs-gGmbHUK MS RegisterWashington University in St. LouisUSA/National Multiple Sclerosis SocietyHospital Universitario de CEMICMonash UniversityUniversity of TasmaniaBulgarian SmartMS COVID-19 DatasetKatholisches Klinikum BochumBrazilian Multiple Sclerosis Association (ABEM)Cleveland ClinicIcometrix – IcompanionQueen Mary University of LondonUniversity Hospital RigshospitaletUniversidade Estadual Paulista (Unesp)RELACOEMEMAHospital Británico de Buenos Aires – EMAStrasbourg University HospitalCOVISEPOspedale San RaffaeleRoyal Melbourne HospitalSorbonne UniversityImperial College LondonSwansea UniversityRamos Mejia Hospital – EMAPeeters, Liesbet MParciak, TinaWalton, ClareGeys, LotteMoreau, YvesDe Brouwer, EdwardRaimondi, DanielePirmani, AshkanKalincik, TomasEdan, GillesSimpson-Yap, SteveDe Raedt, LucDauxais, YannGautrais, ClémentRodrigues, Paulo RMcKenna, LandonLazovski, NikolaHillert, JanForsberg, LarsSpelman, TimMcBurney, RobertSchmidt, HollieBergmann, ArnfinBraune, StefanStahmann, AlexanderMiddleton, RoddenSalter, AmberBebo, Bruce FRojas, Juan Ivan der Walt, AnnekeButzkueven, Helmutvan der Mei, IngridIvanov, RumenHellwig, KerstinSciascia do Olival, GuilhermeCohen, Jeffrey AVan Hecke, WimDobson, RuthMagyari, MelindaBrum, Doralina Guimarães [UNESP]Alonso, RicardoNicholas, RichardBauer, JohanaChertcoff, Anibalde Sèze, JérômeLouapre, CélineComi, GiancarloRijke, Nick2020-12-12T02:15:20Z2020-12-12T02:15:20Z2020-09-01info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/article1157-1162http://dx.doi.org/10.1177/1352458520941485Multiple Sclerosis Journal, v. 26, n. 10, p. 1157-1162, 2020.1477-09701352-4585http://hdl.handle.net/11449/20076210.1177/13524585209414852-s2.0-85087992743Scopusreponame:Repositório Institucional da UNESPinstname:Universidade Estadual Paulista (UNESP)instacron:UNESPengMultiple Sclerosis Journalinfo:eu-repo/semantics/openAccess2024-08-16T15:45:54Zoai:repositorio.unesp.br:11449/200762Repositório InstitucionalPUBhttp://repositorio.unesp.br/oai/requestopendoar:29462024-08-16T15:45:54Repositório Institucional da UNESP - Universidade Estadual Paulista (UNESP)false |
dc.title.none.fl_str_mv |
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 |
spellingShingle |
COVID-19 in people with multiple sclerosis: A global data sharing initiative Peeters, Liesbet M coronavirus 2 COVID-19 data collection humans Multiple sclerosis pandemics registries |
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 |
Peeters, Liesbet M |
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 [UNESP] Alonso, Ricardo Nicholas, Richard Bauer, Johana Chertcoff, Anibal de Sèze, Jérôme Louapre, Céline Comi, Giancarlo Rijke, Nick |
author_role |
author |
author2 |
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 [UNESP] Alonso, Ricardo Nicholas, Richard Bauer, Johana Chertcoff, Anibal de Sèze, Jérôme Louapre, Céline Comi, Giancarlo Rijke, Nick |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author |
dc.contributor.none.fl_str_mv |
Hasselt University University Medical Center Göttingen MS International Federation KU Leuven The University of Melbourne CHU Pontchaillou QMENTA Swedish MS Registry Accelerated Cure Project for MS NeuroTransData MS Forschungs- und Projektentwicklungs-gGmbH UK MS Register Washington University in St. Louis USA/National Multiple Sclerosis Society Hospital Universitario de CEMIC Monash University University of Tasmania Bulgarian SmartMS COVID-19 Dataset Katholisches Klinikum Bochum Brazilian Multiple Sclerosis Association (ABEM) Cleveland Clinic Icometrix – Icompanion Queen Mary University of London University Hospital Rigshospitalet Universidade Estadual Paulista (Unesp) RELACOEM EMA Hospital Británico de Buenos Aires – EMA Strasbourg University Hospital COVISEP Ospedale San Raffaele Royal Melbourne Hospital Sorbonne University Imperial College London Swansea University Ramos Mejia Hospital – EMA |
dc.contributor.author.fl_str_mv |
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 [UNESP] Alonso, Ricardo Nicholas, Richard Bauer, Johana Chertcoff, Anibal de Sèze, Jérôme Louapre, Céline Comi, Giancarlo Rijke, Nick |
dc.subject.por.fl_str_mv |
coronavirus 2 COVID-19 data collection humans Multiple sclerosis pandemics registries |
topic |
coronavirus 2 COVID-19 data collection humans Multiple sclerosis pandemics registries |
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. |
publishDate |
2020 |
dc.date.none.fl_str_mv |
2020-12-12T02:15:20Z 2020-12-12T02:15:20Z 2020-09-01 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
http://dx.doi.org/10.1177/1352458520941485 Multiple Sclerosis Journal, v. 26, n. 10, p. 1157-1162, 2020. 1477-0970 1352-4585 http://hdl.handle.net/11449/200762 10.1177/1352458520941485 2-s2.0-85087992743 |
url |
http://dx.doi.org/10.1177/1352458520941485 http://hdl.handle.net/11449/200762 |
identifier_str_mv |
Multiple Sclerosis Journal, v. 26, n. 10, p. 1157-1162, 2020. 1477-0970 1352-4585 10.1177/1352458520941485 2-s2.0-85087992743 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Multiple Sclerosis Journal |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
1157-1162 |
dc.source.none.fl_str_mv |
Scopus reponame:Repositório Institucional da UNESP instname:Universidade Estadual Paulista (UNESP) instacron:UNESP |
instname_str |
Universidade Estadual Paulista (UNESP) |
instacron_str |
UNESP |
institution |
UNESP |
reponame_str |
Repositório Institucional da UNESP |
collection |
Repositório Institucional da UNESP |
repository.name.fl_str_mv |
Repositório Institucional da UNESP - Universidade Estadual Paulista (UNESP) |
repository.mail.fl_str_mv |
|
_version_ |
1808128170448125952 |