@article{1a6207a77f13498584a036868ffe4fce,
title = "COVID-19 in people with multiple sclerosis: A global data sharing initiative",
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.",
keywords = "COVID-19, Multiple sclerosis, coronavirus 2, data collection, humans, pandemics, registries",
author = "Peeters, {Liesbet M.} and Tina Parciak and Clare Walton and Lotte Geys and Yves Moreau and {De Brouwer}, Edward and Daniele Raimondi and Ashkan Pirmani and Tomas Kalincik and Gilles Edan and Steve Simpson-Yap and {De Raedt}, Luc and Yann Dauxais and Cl{\'e}ment Gautrais and Rodrigues, {Paulo R.} and Landon McKenna and Nikola Lazovski and Jan Hillert and Lars Forsberg and Tim Spelman and Robert McBurney and Hollie Schmidt and Arnfin Bergmann and Stefan Braune and Alexander Stahmann and Rodden Middleton and Amber Salter and Bebo, {Bruce F.} and Rojas, {Juan I.} and {van der Walt}, Anneke and Helmut Butzkueven and {van der Mei}, Ingrid and Rumen Ivanov and Kerstin Hellwig and {Sciascia do Olival}, Guilherme and Cohen, {Jeffrey A.} and {Van Hecke}, Wim and Ruth Dobson and Melinda Magyari and Brum, {Doralina Guimar{\~a}es} and Ricardo Alonso and Richard Nicholas and Johana Bauer and Anibal Chertcoff and {de S{\`e}ze}, J{\'e}r{\^o}me and C{\'e}line Louapre and Giancarlo Comi and Nick Rijke",
note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The operational costs linked to this study are funded by the Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA), acting under the umbrella of the European Charcot Foundation (ECF). The MSDA receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Canopy Growth Corporation, Genzyme, Icometrix, Merck, Mylan, Novartis, QMENTA, Quanterix and Roche. MSIF receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. Funding Information: We would like to thank the sponsors of the Multiple Sclerosis Data Alliance and the Multiple Sclerosis International Federation for providing financial support. Special thanks goes to QMENTA for kindly providing us with the central platform. The authors thank everyone who actively participated in any of the global teleconferences, brainstorms and task force meetings. We would like to thank all the PwMS and healthcare professionals who already contributed to the different data collection efforts. We also want to thank Jan Samyn, Margo Heremans, Angela Hooper, Jorina Nickmans, Gunther Meyer and Victoria Gilbert to support us with ensuring the operational power we needed to speed-up our progress. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The operational costs linked to this study are funded by the Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA), acting under the umbrella of the European Charcot Foundation (ECF). The MSDA receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Canopy Growth Corporation, Genzyme, Icometrix, Merck, Mylan, Novartis, QMENTA, Quanterix and Roche. MSIF receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. Publisher Copyright: {\textcopyright} The Author(s), 2020.",
year = "2020",
month = sep,
day = "1",
doi = "10.1177/1352458520941485",
language = "English",
volume = "26",
pages = "1157--1162",
journal = "Multiple Sclerosis",
issn = "1352-4585",
number = "10",
}