Multiple Sclerosis and Related Disorders · 2020 · 25 citations · 4 references
ComputingBiomedical InformaticsData ScienceBig Data AnalyticsData AnalyticsData ManagementData AnalysisData ExchangeData GovernanceData IntegrationData SharingCollaborative Data AnalysisData-driven InnovationGlobal Research CollaborationGlobal Stakeholder EngagementMulti-stakeholder CollaborationMultiple Sclerosis TherapyPatient-centered Data GovernancePatient-centered Data Sharing
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.
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The FAIR Guiding Principles for scientific data management and stewardship
Mark D. Wilkinson, Michel Dumontier, IJsbrand Jan Aalbersberg et al. · Scientific Data · 2016 · 17.8K citations · Full text