Anna Glaser, Helmut Butzkueven, Anneke van der Walt, Orla Gray, Tim Spelman, Chao Zhu, Maria Trojano, Pietro Iaffaldano, Mario A Battaglia, Giuseppe Lucisano, Sandra Vukusic, Irena Vukusic, Romain Casey, Dana Horakova, Jiri Drahota, Melinda Magyari, Hanna Joensen, Luigi Pontieri, Frederik Elberling, Pernilla Klyve, Elena Flavia Mouresan, Lars Forsberg, Jan Hillert
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...
April 1, 2024: Journal of Neurology