The ultimate goal of the MS Data Alliance (MSDA) is improved care for people with Multiple Sclerosis (MS). We believe a crucial step towards this goal is to invest in “better data for better decision-making”. Two key priorities are formulated: 1° The implementation of a minimal data set and quality standards, approved by the European Medicine Agency (EMA), in as many MS data registries and cohorts as possible. 2° The existence of a federated IT independent data ecosystem that supports re-use and request-based pooling of data when necessary and tackles the challenges of data sharing.
Real-World Data (RWD) can provide longitudinal information on the effectiveness and tolerability of drugs, their impact on resource use, medical costs, and patient-reported outcome (PRO). This is particularly important in MS, where economic treatment benefits of long-term disability reduction are a cornerstone of drug approvals by the payer. These factors are typically not examined in RCTs themselves but modelled using RWD. A growing number of MS databases and registries have started to produce long-term outcome data from large cohorts of patients with MS treated with disease-modifying therapies in real-world settings. However, collaborative initiatives face many challenges, because access to MS registries and/or cohorts is limited and data discovery is time consuming. Data is acquired heterogeneously and differences in definitions, indexing and software platforms preclude direct integration.
We believe a collaborative and synergistic approach is required to jointly tackle these challenges. We are currently in the process of finalizing the project consortium and implement our raising strategy to make this vital project happen.
Project launch in 1Q2019
The Multiple Sclerosis Data Alliance Catalogue: enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources
Geys L, Parciak T, Pirmani A, et al.; 2021: International Journal of MS Care, Volume 23 (6): 261–268, Dezember 2021; doi: 10.7224/1537-2073.2021-006
The Multiple Sclerosis Data Alliance Catalogue: enabling web-based discovery of metadata from real-world multiple sclerosis data sources (Supplementary material)
Supplementary material for Geys L, Parciak T, Pirmani A, et al: The Multiple Sclerosis Data Alliance Catalogue: enabling web-based discovery of metadata from real-world multiple sclerosis data sources. International Journal of MS Care, Volume 23 (6): 261–268, Dezember 2021