Peeters, LM and Parciak, T and Walton, C and Geys, L and Moreau, Y and De Brouwer, E and Raimondi, D and Pirmani, A and Kalincik, T and Edan, G and Simpson-Yap, S and De Raedt, L and Dauxais, Y and Gautrais, C and Rodrigues, PR and McKenna, L and Lazovski, N and Hillert, J and Forsberg, L and Spelman, T and McBurney, R and Schmidt, H and Bergmann, A and Braune, S and Stahmann, A and Middleton, R and Salter, A and Bebo, BF and Rojas, JI and van der Walt, A and Butzkueven, H and van der Mei, I and Ivanov, R and Hellwig, K and Sciascia do Olival, G and Cohen, JA and Van Hecke, W and Dobson, R and Magyari, M and Brum, DG and Alonso, R and Nicholas, R and Bauer, J and Chertcoff, A and de Seze, J and Louapre, C and Comi, G and Rijke, N, COVID-19 in people with multiple sclerosis: a global data sharing initiative, Multiple Sclerosis Journal pp. 1-6. ISSN 1352-4585 (2020) [Refereed Article]
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© The Author(s), 2020. published under a Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) license (https://creativecommons.org/licenses/by-nc/4.0/)
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.
|Item Type:||Refereed Article|
|Keywords:||multiple sclerosis, pandemics, COVID-19, data collection, registries, coronavirus 2, humans|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Central nervous system|
|Objective Group:||Clinical health|
|Objective Field:||Clinical health not elsewhere classified|
|UTAS Author:||Simpson-Yap, S (Dr Steve Simpson JR)|
|UTAS Author:||van der Mei, I (Professor Ingrid van der Mei)|
|Web of Science® Times Cited:||29|
|Deposited By:||Menzies Institute for Medical Research|
|Downloads:||13 View Download Statistics|
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