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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 1157-1162 |
| Number of pages | 6 |
| Journal | Multiple Sclerosis Journal |
| Volume | 26 |
| Issue number | 10 |
| DOIs | |
| State | Published - Sep 1 2020 |
| Externally published | Yes |
Keywords
- COVID-19
- Multiple sclerosis
- coronavirus 2
- data collection
- humans
- pandemics
- registries
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
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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.
In: Multiple Sclerosis Journal, Vol. 26, No. 10, 01.09.2020, p. 1157-1162.Research output: Contribution to journal › Article › peer-review
}
TY - JOUR
T1 - COVID-19 in people with multiple sclerosis
T2 - A global data sharing initiative
AU - Peeters, Liesbet M.
AU - Parciak, Tina
AU - Walton, Clare
AU - Geys, Lotte
AU - Moreau, Yves
AU - De Brouwer, Edward
AU - Raimondi, Daniele
AU - Pirmani, Ashkan
AU - Kalincik, Tomas
AU - Edan, Gilles
AU - Simpson-Yap, Steve
AU - De Raedt, Luc
AU - Dauxais, Yann
AU - Gautrais, Clément
AU - Rodrigues, Paulo R.
AU - McKenna, Landon
AU - Lazovski, Nikola
AU - Hillert, Jan
AU - Forsberg, Lars
AU - Spelman, Tim
AU - McBurney, Robert
AU - Schmidt, Hollie
AU - Bergmann, Arnfin
AU - Braune, Stefan
AU - Stahmann, Alexander
AU - Middleton, Rodden
AU - Salter, Amber
AU - Bebo, Bruce F.
AU - Rojas, Juan I.
AU - van der Walt, Anneke
AU - Butzkueven, Helmut
AU - van der Mei, Ingrid
AU - Ivanov, Rumen
AU - Hellwig, Kerstin
AU - Sciascia do Olival, Guilherme
AU - Cohen, Jeffrey A.
AU - Van Hecke, Wim
AU - Dobson, Ruth
AU - Magyari, Melinda
AU - Brum, Doralina Guimarães
AU - Alonso, Ricardo
AU - Nicholas, Richard
AU - Bauer, Johana
AU - Chertcoff, Anibal
AU - de Sèze, Jérôme
AU - Louapre, Céline
AU - Comi, Giancarlo
AU - Rijke, Nick
N1 - 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. Funding Information: 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. Publisher Copyright: © The Author(s), 2020.
PY - 2020/9/1
Y1 - 2020/9/1
N2 - 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.
AB - 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.
KW - COVID-19
KW - Multiple sclerosis
KW - coronavirus 2
KW - data collection
KW - humans
KW - pandemics
KW - registries
UR - http://www.scopus.com/inward/record.url?scp=85087992743&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85087992743&partnerID=8YFLogxK
U2 - 10.1177/1352458520941485
DO - 10.1177/1352458520941485
M3 - Article
C2 - 32662757
AN - SCOPUS:85087992743
VL - 26
SP - 1157
EP - 1162
JO - Multiple Sclerosis
JF - Multiple Sclerosis
SN - 1352-4585
IS - 10
ER -