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

被引：49

作者：

Peeters, Liesbet M. ^{[1
,2
]}

Parciak, Tina ^{[3
]}

Walton, Clare ^{[4
]}

Geys, Lotte ^{[1
,2
]}

Moreau, Yves ^{[5
]}

De Brouwer, Edward ^{[5
]}

Raimondi, Daniele ^{[5
]}

Pirmani, Ashkan ^{[1
,2
,5
]}

Kalincik, Tomas ^{[6
,7
]}

Edan, Gilles ^{[8
]}

Simpson-Yap, Steve ^{[9
,10
]}

De Raedt, Luc ^{[11
,12
]}

Dauxais, Yann ^{[11
,12
]}

Gautrais, Clement ^{[11
,12
]}

Rodrigues, Paulo R. ^{[13
]}

McKenna, Landon ^{[13
]}

Lazovski, Nikola ^{[13
]}

Hillert, Jan ^{[14
]}

Forsberg, Lars ^{[14
]}

Spelman, Tim ^{[14
]}

McBurney, Robert ^{[15
]}

Schmidt, Hollie ^{[15
]}

Bergmann, Arnfin ^{[16
]}

Braune, Stefan ^{[16
]}

Stahmann, Alexander ^{[17
]}

Middleton, Rodden ^{[18
]}

Salter, Amber ^{[19
,20
]}

Bebo, Bruce F. ^{[19
,21
]}

Rojas, Juan, I ^{[22
,23
]}

van der Walt, Anneke ^{[24
]}

Butzkueven, Helmut ^{[24
]}

van der Mei, Ingrid ^{[25
]}

Ivanov, Rumen ^{[26
]}

Hellwig, Kerstin ^{[27
]}

do Olival, Guilherme Sciascia ^{[28
]}

Cohen, Jeffrey A. ^{[29
]}

Van Hecke, Wim ^{[30
]}

Dobson, Ruth ^{[31
]}

Magyari, Melinda ^{[32
]}

Brum, Doralina Guimaraes ^{[33
]}

Alonso, Ricardo ^{[23
,34
]}

Nicholas, Richard ^{[18
,35
,36
]}

Bauer, Johana ^{[37
]}

Chertcoff, Anibal ^{[38
]}

de Seze, Jerome ^{[39
,40
]}

Louapre, Celine ^{[40
,41
]}

Comi, Giancarlo ^{[42
]}

Rijke, Nick ^{[4
]}

机构：

[1] Hasselt Univ, Biomed Res Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium

[2] Hasselt Univ, Data Sci Inst, Agoralaan Bldg C, B-3590 Diepenbeek, Belgium

[3] Univ Med Ctr Gottingen, Dept Med Informat, Gottingen, Germany

[4] MS Int Federat, London, England

[5] Katholieke Univ Leuven, ESAT STADIUS, Leuven, Belgium

[6] Univ Melbourne, Clin Outcomes Res CORe Unit, Melbourne, Vic, Australia

[7] Royal Melbourne Hosp, Melbourne MS Ctr, Dept Neurol, Melbourne, Vic, Australia

[8] CHU Pontchaillou, Dept Neurol, Rennes, France

[9] Univ Melbourne, Melbourne Sch Populat & Global Hlth, Neuroepidemiol Unit, Melbourne, Vic, Australia

[10] Univ Tasmania, Menzies Inst Med Res, Hobart, Tas, Australia

[11] Katholieke Univ Leuven, Dept Comp Sci, Leuven, Belgium

[12] Katholieke Univ Leuven, Leuven AI, Leuven, Belgium

[13] QMENTA, Barcelona, Spain

[14] Swedish MS Registry, Dept Clin Neurosci, Stockholm, Sweden

[15] Accelerated Cure Project MS, iConquerMS People Powered Res Network, Waltham, MA USA

[16] NeuroTransData, NeuroTransData Study Grp, Neuburg, Germany

[17] MS Forsch & Projektentwicklungs gGmbH, Hannover, Germany

[18] UK MS Register, Swansea, W Glam, Wales

[19] COViMS, St Louis, MO USA

[20] Washington Univ, Div Biostat, St Louis, MO USA

[21] Natl Multiple Sclerosis Soc, Portland, OR USA

[22] Hosp Univ CEMIC, Neurol Dept, Buenos Aires, DF, Argentina

[23] RELACOEM, Buenos Aires, DF, Argentina

[24] Monash Univ, Dept Neurosci, MSBase Registry, Cent Clin Sch, Melbourne, Vic, Australia

[25] Univ Tasmania, Menzies Inst Med Res, Australian MS Longitudinal Study AMSLS, Hobart, Tas, Australia

[26] Bulgarian SmartMS COVID 19 Dataset, Sofia, Bulgaria

[27] Katholisches Klinikum Bochum, Dept Neurol, LEOSS, Bochum, Germany

[28] Brazilian Multiple Sclerosis Assoc ABEM, Sao Paulo, Brazil

[29] Cleveland Clin, Mellen MS Ctr, MS COVID 19 Registry, Cleveland, OH 44106 USA

[30] Icometrix Icompan, Leuven, Belgium

[31] Queen Mary Univ London, OptimiseMS Prevent Neurol Unit, London, England

[32] Univ Hosp Rigshosp, Dept Neurol, Danish Multiple Sclerosis Registry, Glostrup, Denmark

[33] Univ Estadual Paulista Unesp, Fac Med, REDONE Brazilian Registry Multiple Sclerosis & Ne, Opt Spectrum Disorders, Sao Paulo, Brazil

[34] Multiple Sclerosis Univ Ctr, Ramos Mejia Hosp EMA, Buenos Aires, DF, Argentina

[35] Imperial Coll London, London, England

[36] Swansea Univ, Swansea, W Glam, Wales

[37] EMA, Mental Hlth Area, Buenos Aires, DF, Argentina

[38] Hosp Britanico Buenos Aires EMA, MS & Demyelinating Dis, Buenos Aires, DF, Argentina

[39] Strasbourg Univ Hosp, Dept Neurol, Strasbourg, France

[40] COVISEP, Paris, France

[41] Sorbonne Univ, Inst Cerveau ICM, Hop Pitie Salpetriere, AP HP, Paris, France

[42] Osped San Raffaele, Inst Expt Neurol, Milan, Italy

来源：

MULTIPLE SCLEROSIS JOURNAL | 2020年 / 26卷 / 10期

关键词：

Multiple sclerosis; pandemics; COVID-19; data collection; registries; coronavirus; 2; humans;

D O I：

10.1177/1352458520941485

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.

引用

页码：1157 / 1162

页数：6

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