Multiple Sclerosis Data Alliance – A global multi-stakeholder collaboration to scale-up real world data research
Liesbet M. Peeters, Tina Parciak, Dipak Kalra, Yves Moreau, Elisabeth Kasilingam, Pieter van Galen, Christoph Thalheim, Bernard M.J. Uitdehaag, Patrick Vermersch, Niels Hellings, Piet Stinissen, Bart Van Wijmeersch, Amin Ardeshirdavani, Ashkan Pirmani, Edward De Brouwer, Christian R. Bauer, Dagmar Krefting, Stephanie Ribbe, Rod Middleton, Alexander Stahmann, Gıancarlo Comı
Abstract
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.