TY - JOUR
T1 - Multiple Sclerosis Data Alliance – A global multi-stakeholder collaboration to scale-up real world data research
AU - Peeters, Liesbet M.
AU - Parciak, Tina
AU - Kalra, Dipak
AU - Moreau, Yves
AU - Kasilingam, Elisabeth
AU - van Galen, Pieter
AU - Thalheim, Christoph
AU - Uitdehaag, Bernard
AU - Vermersch, Patrick
AU - Hellings, Niels
AU - Stinissen, Piet
AU - Van Wijmeersch, Bart
AU - Ardeshirdavani, Amin
AU - Pirmani, Ashkan
AU - De Brouwer, Edward
AU - Bauer, Christian Robert
AU - Krefting, Dagmar
AU - Ribbe, Stephanie
AU - Middleton, Rod
AU - Stahmann, Alexander
AU - Comi, Giancarlo
N1 - Funding Information: We would like to thank the sponsors of the MS Data Alliance. The MSDA receives income from a range of corporate sponsors, recently including: Biogen, BristolMyersSquibb (formerly Celgene), Canopy Growth Corporation, Genzyme, Icometrix, Merck, Mylan, Novartis, QMENTA, Quanterix, Roche. We would like to thank the European MS Platform and the University MS Center of Hasselt University for founding the initiative. Next to this, we would like to thank the other core partners for their continued support: the European Charcot Foundation, The European Institute for Innovation through Health Data, the University of G?ttingen and KULeuven. A special thanks to our pioneer registries: the UK MS registry and the German MS registry. Publisher Copyright: © 2020 Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/1
Y1 - 2021/1
N2 - The Multiple Sclerosis Data Alliance (MSDA), a global multi-stakeholder collaboration, is working to accelerate research insights for innovative care and treatment for people with multiple sclerosis (MS) through better use of real-world data (RWD). Despite the increasing reliance on RWD, challenges and limitations complicate the generation, collection, and use of these data. MSDA aims to tackle sociological and technical challenges arising with scaling up RWD, specifically focused on MS data. MSDA envisions a patient-centred data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.
AB - The Multiple Sclerosis Data Alliance (MSDA), a global multi-stakeholder collaboration, is working to accelerate research insights for innovative care and treatment for people with multiple sclerosis (MS) through better use of real-world data (RWD). Despite the increasing reliance on RWD, challenges and limitations complicate the generation, collection, and use of these data. MSDA aims to tackle sociological and technical challenges arising with scaling up RWD, specifically focused on MS data. MSDA envisions a patient-centred data ecosystem in which all stakeholders contribute and use big data to co-create the innovations needed to advance timely treatment and care of people with MS.
KW - Real world data
KW - collaboration
KW - learning health system
KW - multiple sclerosis
KW - patient engagement
UR - http://www.scopus.com/inward/record.url?scp=85097149927&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.msard.2020.102634
DO - https://doi.org/10.1016/j.msard.2020.102634
M3 - Letter
C2 - 33278741
SN - 2211-0348
VL - 47
JO - Multiple Sclerosis and Related Disorders
JF - Multiple Sclerosis and Related Disorders
M1 - 102634
ER -