In 2018, an updated mapping of multiple sclerosis (MS) registries in Europe was conducted, building on a previous survey from 2014. This survey covers 19 registries, mostly from Europe, and provides detailed information on the organisation, data collection methods, quality of control mechanisms and funding of these registries. The study highlights the importance of MS registries for clinical practice, research and regulatory purposes and identifies areas that could contribute to improving data collection and use in international collaborations.
Glaser, A., Stahmann, A., Meissner, T., Flachenecker, P., Horáková, D., Zaratin, P., Brichetto, G., Pugliatti, M., Rienhoff, O., Vukusic, S., de Giacomoni, A. C., Battaglia, M. A., Brola, W., Butzkueven, H., Casey, R., Drulovic, J., Eichstädt, K., Hellwig, K., Iaffaldano, P., Ioannidon, E., Kuhle, E., Lycke, K., Magyari, M., Malbasa, T., Middelton, R., Myhr, K. M., Notas, K., Orologas, A., Otero-Romero, S., Pekmezovic, T., Sastre-Garriga, J., Seeldrayers, P., Soilu-Hännien, M., Stawiarz, L., Trojano, M., Zeimssen, T., Hilletr, J., Thalheim, C. (2019). Multiple sclerosis registries in Europe - An updated mapping survey. In Multiple Sclerosis and Related Disorders (Vol. 27, pp. 171-178). Elsevier BV. https://doi.org/10.1016/j.msard.2018.09.032 PMID: 30384204
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