National registry of patients with multiple sclerosis (ReMuS): How did we change over the first five years of data collection
Abstract
Multiple Sclerosis is a serious neurological illness affecting approximately 20,000 patients in the Czech Republic. Without treatment,the majority of patients develop a severe disability.
Although there is still no cure for the disease, we can at least slowdown its progress thanks to modern, but costly therapy. The modern drugs are undoubtfully more effective; however, they alsopose a higher risk of developing various adverse events that must be carefully monitored.
The basics of proper patient treatmentmanagement primarily rely on the data from the registration studies as well as the data regarding the treatment effectivity andsafety obtained from real clinical practice. The latter data can be collected via high-quality registries.
In the Czech Republic, theregistry ReMuS founded and run by a non-governmental organization the Endowment Fund IMPULS together with the scientificcommunity has been collecting the data since 2013. Over the five years of its existence, the number of patients monitored by ReMuShas increased more than ninefold; the registry contained data of more than 13 thousand patients in all phases of the disease asof June 30, 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 beobtained at www.multiplesclerosis.cz.