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. 2020 Sep;26(10):1157-1162.
doi: 10.1177/1352458520941485. Epub 2020 Jul 14.

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

Affiliations

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

Liesbet M Peeters et al. Mult Scler. 2020 Sep.

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.

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Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: L.M.P. has no personal pecuniary interests to disclose, other than being the chair of The MS Data Alliance (MSDA), which 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. C.W. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. T.K. served on scientific advisory boards for Roche, Sanofi-Genzyme, Novartis, Merck and Biogen, steering committee for Brain Atrophy Initiative by Sanofi-Genzyme; received conference travel support and/or speaker honoraria from WebMD Global, Novartis, Biogen, Sanofi-Genzyme, Teva, BioCSL and Merck; and received research support from Biogen. G.E. has received consulting/speaking fees/research support from Bayer, Novartis, Teva, Sanofi-Genzyme, Merck-Serono, Biogen Idec and Roche. P.R.R. is shareholder, employee and member of board of directors of QMENTA. J.H. has received honoraria for serving on advisory boards for Biogen, Celgene, Sanofi-Genzyme, Merck KGaA, Novartis and Sandoz and speaker’s fees from Biogen, Novartis, Merck KGaA, Teva and Sanofi-Genzyme. He has served as P.I. for projects or received unrestricted research support from Biogen, Celgene, Merck KGaA, Novartis, Roche and Sanofi-Genzyme. His MS research was funded by the Swedish Research Council and the Swedish Brain foundation. Accelerated Cure Project for MS (ACP) has received grants, collaboration funding, payments for use of assets or in-kind contributions from the following companies: EMD Serono, Sanofi-Genzyme, Biogen, Genentech, AbbVie, Octave, GlycoMinds, Pfizer, Med-Day, AstraZeneca, Teva, Mallinckrodt, MSDx, Regeneron Genetics Centre, BC Platforms and Celgene. ACP has also received funding from the Patient-Centred Outcomes Research Institute (PCORI) and the National MS Society (NMSS). R.M. has received consulting payments from EMD Serono, which have been donated to ACP. A.B. has received consulting fees from advisory board/speaker/other activities for NeuroTransData and project management/clinical studies and travel expenses from Novartis and Servier. A.S. has no personal pecuniary interests to disclose, other than being the lead of the German MS Registry, which receives funding from a range of public and corporate sponsors, recently including The German Innovation Fund (G-BA), The German MS Trust, Biogen, German MS Society, Celgene (BMS), Merck and Novartis. A.S. is statistical editor for Circulation: Cardiovascular Imaging. J.I.R. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina and Novartis Argentina. A.v.d.W. has received honoraria and unrestricted research funding from Novartis, Biogen, Roche, Merck and Sanofi. H.B. Institution has received honoraria for steering committee activities, advisory board and meeting activities from Roche, Biogen, Novartis and Merck. H.B. has received consulting fees from Finstat (IQVIA) and Oxford Health policy Forum. J.A.C. has received personal compensation for consulting for Adamas, Convelo, Med-Day, Mylan and Population Council and is serving as an Editor of Multiple Sclerosis Journal. W.V.H. is shareholder, employee and member of board of directors of Icometrix. OPTIMISEMS has received funding from Biogen, Merck and Celgene. R.D. has received honoraria from Biogen, Merck and Teva. M.M. has served on scientific advisory board for Biogen, Sanofi, Roche, Novartis, Merck and AbbVie; received honoraria for lecturing from Biogen, Merck, Novartis, Sanofi-Genzyme; and received research support and support for congress participation from Biogen, Genzyme, Roche, Merck and Novartis. R.A. has received honoraria from Novartis as a scientific advisor. He has received travel grants and attended courses and conferences on behalf of Merck-Serono Argentina, Biogen Argentina, Genzyme Argentina, Roche Argentina and Novartis Argentina. R.N. has received honoraria from Novartis, Roche and Biogen for advisory boards. J.d.S. has received Honoraria from Biogen, Roche, Genzyme, Celgene, Alexion and Novartis. C.L. has received consulting or travel fees from Biogen, Novartis, Roche, Sanofi, Teva and Merck-Serono. G.C. has received consulting and speaking fees from Novartis, Teva Pharmaceutical Industries Ltd, Teva Italia Srl, Sanofi-Genzyme Corporation, Genzyme Europe, Merck KGgA, Merck-Serono SpA, Celgene Group, Biogen Idec, Biogen Italia Srl, F. Hoffman-La Roche, Roche SpA, Almirall SpA, Forward Pharma, Med-Day and Excemed. N.R. has no personal pecuniary interests to disclose, other than being an employee of MSIF, which receives income from a range of corporate sponsors, recently including Biogen, Bristol-Myers Squibb (formerly Celgene), Genzyme, Med-Day, Merck, Mylan, Novartis and Roche. RMM has reviewed no personal funding from any sources, the UK MS Register is funded by the MS Society and has received funding for specific projects from Novartis, Sanofi-Genzyme and Merck KGaA. T.P., L.G., Y.M., E.D.B., D.R., A.P., S.S.-Y., L.D.R., Y.D., C.G., L.M., N.L., L.F., T.S., S.B., B.F.B., I.v.d.M., R.I., K.H., G.S.d.O., D.G.B., J.B. and A.C. report no disclosures.

Figures

Figure 1.
Figure 1.
High-level overview of the COVID-19 in MS-global data sharing initiative: we recommend the implementation of the COVID-19 in MS core data set in as many different data initiatives (registries/cohorts) as possible. All initiatives are invited to regularly share de-identified COVID-19 in MS core data sets into the central platform. In parallel, direct entry of individual PwMS and clinicians in the central platform is possible. The data sources are combined within the platform and the expert epidemiology groups check the quality of the data sources. Once a certain threshold of trustworthiness of the data and the results is met, the platform will become interactive and feed back results to the community.

Comment in

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