Nationwide Registry of Multiple Sclerosis ReMuS - The Importance of Data Collection from Real Clinical Practice
Abstract
Multiple sclerosis (MS) is a serious neurologic disease occurring in young people. Uncured it results in significant disability in a considerable number of patients.
In the Czech Republic, approximately 17-19 thousand patients suffer from this disease. For the time being, we are not able to cure it.
However, thanks to the modern, though expensive, therapy we can slow down markedly its early stage. Nevertheless, without regular data collected from the real-life clinical practice the effect and safety of MS therapy cannot be evaluated, as well as other MS mechanisms cannot be discovered.
Such data collection can be successful only if an agreement on a common set of collected data exists and if conditions for such data collection are provided. Recently, the MSBase has become an international leader in this field.
In the Czech Republic, the data have been collected since 2013 by the ReMuS registry (Figure 1) established by the non-profit IMPULS Foundation in cooperation with an expert association. By 30th June 2016, data of more than eight thousand patients treated by the expensive biological therapy in 14 MS centres all over the Czech Republic were entered in this registry (Figure 2)