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Big Multiple Sclerosis Data network: an international registry research network
Anna Glaser1, Helmut Butzkueven2, Anneke van der Walt3
1Department of Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.
Journal of Neurology
|April 1, 2024
Summary
The Big Multiple Sclerosis Data (BMSD) network enables collaborative real-world evidence research by pooling international registry data. BMSD overcomes data sharing challenges to advance multiple sclerosis (MS) studies.
Area of Science:
- Neurology
- Data Science
- Public Health
Background:
- The Big Multiple Sclerosis Data (BMSD) network, established in 2014, integrates multiple sclerosis (MS) registries from multiple countries and the international MSBase registry.
- BMSD has successfully navigated ethical, legal, technical, and governance challenges for data sharing, demonstrating its collaborative framework through three scientific publications on pooled datasets.
Purpose of the Study:
- To establish a robust framework for collaborative real-world evidence (RWE) research in multiple sclerosis (MS).
- To facilitate joint analysis of data from independent MS registries.
- To advance the generation and utilization of RWE in the field of MS.
Main Methods:
- Federated data analysis procedures developed to overcome data sharing challenges across independently operating registries.
- Development of a unifying core data model for project-specific data models, enabling joint analysis despite different platforms.
- Consensus-driven modifications in adverse event data collection across registries, showcasing coordinated development.
Main Results:
- Successful proof-of-concept for collaborative design through pooled dataset analyses.
- Demonstrated ability to coordinate data collection modifications through consensus decisions.
- Established procedures for federated data analysis to enable joint research.
Conclusions:
- BMSD is actively seeking European Medicines Agency (EMA) qualification for post-authorization safety studies (PASS) and effectiveness studies (PAES).
- The network aims to significantly contribute to the advancement of real-world evidence research in multiple sclerosis.
- BMSD's infrastructure and collaborative approach position it as a key player in future MS research.
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