In 2018, an updated mapping of multiple sclerosis (MS) registries in Europe was conducted, building on a previous survey from 2014. This survey includes 19 registries, mostly from Europe, and provides detailed information on the organization, data collection methods, quality control mechanisms, and funding of these registries. The study highlights the importance of MS registries for clinical practice, research, and regulatory purposes, identifying areas that could contribute to improving data collection and utilization 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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