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Big Multiple Sclerosis Data network: an international registry research network
A. Glaser, H. Butzkueven, A. van der Walt, O. Gray, T. Spelman, C. Zhu, M. Trojano, P. Iaffaldano, MA. Battaglia, G. Lucisano, S. Vukusic, I. Vukusic, R. Casey, D. Horakova, J. Drahota, M. Magyari, H. Joensen, L. Pontieri, F. Elberling, P. Klyve,...
Jazyk angličtina Země Německo
Typ dokumentu časopisecké články
NLK
ProQuest Central
od 1997-04-01 do Před 1 rokem
Medline Complete (EBSCOhost)
od 2000-01-01 do Před 1 rokem
Health & Medicine (ProQuest)
od 1997-04-01 do Před 1 rokem
- MeSH
- big data MeSH
- lidé MeSH
- mezinárodní spolupráce MeSH
- registrace * MeSH
- roztroušená skleróza * epidemiologie terapie MeSH
- šíření informací MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
BACKGROUND: The Big Multiple Sclerosis Data (BMSD) network ( https://bigmsdata.org ) was initiated in 2014 and includes the national multiple sclerosis (MS) registries of the Czech Republic, Denmark, France, Italy, and Sweden as well as the international MSBase registry. BMSD has addressed the ethical, legal, technical, and governance-related challenges for data sharing and so far, published three scientific papers on pooled datasets as proof of concept for its collaborative design. DATA COLLECTION: Although BMSD registries operate independently on different platforms, similarities in variables, definitions and data structure allow joint analysis of data. Certain coordinated modifications in how the registries collect adverse event data have been implemented after BMSD consensus decisions, showing the ability to develop together. DATA MANAGEMENT: Scientific projects can be proposed by external sponsors via the coordinating centre and each registry decides independently on participation, respecting its governance structure. Research datasets are established in a project-to-project fashion and a project-specific data model is developed, based on a unifying core data model. To overcome challenges in data sharing, BMSD has developed procedures for federated data analysis. FUTURE PERSPECTIVES: Presently, BMSD is seeking a qualification opinion from the European Medicines Agency (EMA) to conduct post-authorization safety studies (PASS) and aims to pursue a qualification opinion also for post-authorization effectiveness studies (PAES). BMSD aspires to promote the advancement of real-world evidence research in the MS field.
Center for Outcomes Research and Clinical Epidemiology CORESEARCH Pescara Italy
Department of Clinical Neuroscience Karolinska Institute Stockholm Sweden
Department of Life Sciences University of Siena Siena Italy
Department of Neurology The Alfred Hospital Melbourne VIC Australia
Department of Neuroscience Central Clinical School Monash University Melbourne VIC Australia
Eugène Devic EDMUS Foundation Against Multiple Sclerosis State Approved Foundation 69677 Bron France
IMPULS Endowment Fund Prague Czech Republic
Research Department Italian Multiple Sclerosis Foundation Genoa Italy
School of Medicine University Aldo Moro Bari Italy
South Eastern Health and Social Care Trust Belfast UK
Université de Lyon Université Claude Bernard Lyon 1 69000 Lyon France
Citace poskytuje Crossref.org
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