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ReMuS registry of patients with multiple sclerosis - the importance of data in chronic diseases

Publication at First Faculty of Medicine |
2019

Abstract

Multiple sclerosis is a serious neurological illness affecting approximately 20,000 patients in the Czech Republic. Without treatment, the majority of patients develops a severe disability.

Although there is still no cure for the disease, we can at least slow down its progress thanks to modern, but costly therapy. The modern drugs are undoubtfully more effective; however, they also pose a higher risk of developing various adverse events that must be carefully monitored.

The basics of proper patient treatment management primarily rely on the data from the registration studies as well as the data regarding the treatment effectivity and safety obtained from real clinical practice. The latter data can be collected via high-quality registries.

In the Czech Republic, the registry ReMuS founded and run by a non-governmental organization the Endowment Fund IMPULS together with the scientific community has been collecting the data since 2013. Over the six years of its existence, the number of patients monitored by ReMuS has increased more than ninefold; the registry contained data of almost 15 thousand patients from all 15 specialized centers in the Czech Repulic as of December 31, 2018.

The registry regularly provides important cross-sectional data on the demographics, the severity of the disease, the type of treatment, and the ability to work, and has also started to provide first longitudinal analysis. More information can be obtained at HYPERLINK "http://www.multiplesclerosis.cz/"www.multiplesclerosis.cz.