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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.
  • Peeters LM; Biomedical Research Institute and Data Science Institute, Hasselt University, Diepenbeek, Belgium.
  • Parciak T; Department of Medical Informatics, University Medical Center Göttingen, Göttingen, Germany.
  • Walton C; MS International Federation, London, UK.
  • Geys L; Biomedical Research Institute and Data Science Institute, Hasselt University, Diepenbeek, Belgium.
  • Moreau Y; ESAT-STADIUS, KU Leuven, Leuven, Belgium.
  • De Brouwer E; ESAT-STADIUS, KU Leuven, Leuven, Belgium.
  • Raimondi D; ESAT-STADIUS, KU Leuven, Leuven, Belgium.
  • Pirmani A; Biomedical Research Institute and Data Science Institute, Hasselt University, Diepenbeek, Belgium/ESAT-STADIUS, KU Leuven, Leuven, Belgium.
  • Kalincik T; Clinical Outcomes Research (CORe) Unit, The University of Melbourne, Melbourne, VIC, Australia/Melbourne MS Centre, Department of Neurology, Royal Melbourne Hospital, Melbourne, VIC, Australia.
  • Edan G; Department of Neurology, CHU Pontchaillou, Rennes, France.
  • Simpson-Yap S; Neuroepidemiology Unit, Melbourne School of Population & Global Health, The University of Melbourne, Melbourne, VIC, Australia/Menzies Institute for Medical Research, University of Tasmania, Hobart, TAS, Australia.
  • De Raedt L; Department of Computer Science and Leuven.AI, KU Leuven, Leuven, Belgium.
  • Dauxais Y; Department of Computer Science and Leuven.AI, KU Leuven, Leuven, Belgium.
  • Gautrais C; Department of Computer Science and Leuven.AI, KU Leuven, Leuven, Belgium.
  • Rodrigues PR; QMENTA, Barcelona, Spain.
  • McKenna L; QMENTA, Barcelona, Spain.
  • Lazovski N; QMENTA, Barcelona, Spain.
  • Hillert J; Department of Clinical Neuroscience, Swedish MS Registry, Stockholm, Sweden.
  • Forsberg L; Department of Clinical Neuroscience, Swedish MS Registry, Stockholm, Sweden.
  • Spelman T; Department of Clinical Neuroscience, Swedish MS Registry, Stockholm, Sweden.
  • McBurney R; iConquerMS People-Powered Research Network, Accelerated Cure Project for MS, Waltham, MA, USA.
  • Schmidt H; iConquerMS People-Powered Research Network, Accelerated Cure Project for MS, Waltham, MA, USA.
  • Bergmann A; NeuroTransData Study Group, NeuroTransData, Neuburg, Germany.
  • Braune S; NeuroTransData Study Group, NeuroTransData, Neuburg, Germany.
  • Stahmann A; MS Forschungs- und Projektentwicklungs-gGmbH, Hannover, Germany.
  • Middleton R; UK MS Register, Swansea, UK.
  • Salter A; COViMS, St Louis, USA/ Division of Biostatistics, Washington University in St. Louis, St. Louis, MO, USA.
  • Bebo BF; COViMS, USA/National Multiple Sclerosis Society, Portland, OR, USA.
  • Rojas JI; Neurology Department, Hospital Universitario de CEMIC, Buenos Aires, Argentina/RELACOEM, Buenos Aires, Argentina.
  • van der Walt A; MSBase Registry, Department of Neuroscience, Central Clinical School, Monash University, Melbourne, VIC, Australia.
  • Butzkueven H; MSBase Registry, Department of Neuroscience, Central Clinical School, Monash University, Melbourne, VIC, Australia.
  • van der Mei I; The Australian MS Longitudinal Study (AMSLS), Menzies Institute for Medical Research, University of Tasmania, Hobart, TAS, Australia.
  • Ivanov R; Bulgarian SmartMS COVID-19 Dataset, Sofia, Bulgaria.
  • Hellwig K; LEOSS, Department of Neurology, Katholisches Klinikum Bochum, Bochum, Germany.
  • Sciascia do Olival G; Brazilian Multiple Sclerosis Association (ABEM), São Paulo, Brazil.
  • Cohen JA; Cleveland Clinic MS COVID-19 Registry, Mellen MS Center, Cleveland Clinic, Cleveland, OH, USA.
  • Van Hecke W; Icometrix - Icompanion, Leuven, Belgium.
  • Dobson R; OptimiseMS, Preventive Neurology Unit, Queen Mary University of London, London, UK.
  • Magyari M; The Danish Multiple Sclerosis Registry, Department of Neurology, University Hospital Rigshospitalet, Glostrup, Denmark.
  • Brum DG; Universidade Estadual Paulista (Unesp), Faculdade de Medicina, Botucatu/REDONE - Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders, São Paulo, Brazil.
  • Alonso R; RELACOEM, Buenos Aires, Argentina/Multiple Sclerosis University Center, Ramos Mejia Hospital - EMA, Buenos Aires, Argentina.
  • Nicholas R; UK MS Register, Swansea, UK/Imperial College London, London, UK/Swansea University, Swansea, UK.
  • Bauer J; Mental Health Area, EMA, Buenos Aires, Argentina.
  • Chertcoff A; MS and Demyelinating Diseases, Hospital Británico de Buenos Aires - EMA, Buenos Aires, Argentina.
  • de Sèze J; Department of Neurology, Strasbourg University Hospital, Strasbourg, France/ COVISEP, France.
  • Louapre C; COVISEP, France/Institut du Cerveau ICM, APHP - Hôpital Pitié Salpêtrière, Sorbonne University, Paris, France.
  • Comi G; Institute of Experimental Neurology, Ospedale San Raffaele, Milan, Italy.
  • Rijke N; MS International Federation, London, UK.
Mult Scler ; 26(10): 1157-1162, 2020 09.
Article in English | MEDLINE | ID: covidwho-646806
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.
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Full text: Available Collection: International databases Database: MEDLINE Main subject: Pneumonia, Viral / Registries / Coronavirus Infections / Multiple Sclerosis Type of study: Prognostic study Topics: Long Covid Limits: Humans Language: English Journal: Mult Scler Journal subject: Neurology Year: 2020 Document Type: Article Affiliation country: 1352458520941485

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Pneumonia, Viral / Registries / Coronavirus Infections / Multiple Sclerosis Type of study: Prognostic study Topics: Long Covid Limits: Humans Language: English Journal: Mult Scler Journal subject: Neurology Year: 2020 Document Type: Article Affiliation country: 1352458520941485