Polish registry of multiple sclerosis patients – current status, perspectives and problems
Waldemar Brola1, Małgorzata Fudala1, Stanisław Flaga2, Danuta Ryglewicz3, Andrzej Potemkowski4
Multiple sclerosis is a progressive, inflammatory demyelinating disease of the central nervous system, of an unknown aetiology. It predominantly affects younger people. Approximately, 40,000 people in Poland are estimated to suffer from multiple sclerosis, with about 2000 new patients diagnosed annually. Those rates are based solely on the statistics provided by the National Health Fund, and do not cover various essential information e.g. about the course and form of the disease, the degree of disability, the type of treatment, or the data on patients’ quality of life. In most European countries, this information is gathered by national registries of patients, which in many cases have operated for many years now. Up until recently, Poland stood as an embarrassing exception, being the biggest country with so many patients and no systematic registry. In 2013, the National Register of MS Patients was finally created following other countries’ example, in order to evaluate the basic epidemiological parameters collected from all centres specialising in the treatment of multiple sclerosis countrywide. The article presents the most important European databases, and explains the assumptions of the Polish Register of MS Patients that has been in existence since 2013. It also discusses the results from the Świętokrzyskie province, the national leader in multiple sclerosis data collection. As of December 31, 2013, the prevalence in this region of Poland was estimated at 109.1/100,000, and the incidence rate in 2011–2013 at 4.1/100,000 per year, with both rates higher than previously presented. A preliminary analysis of patients’ self-assessment of quality of life is also provided here, along with a discussion of the confinements, limitations and problems the further development of the registry is currently facing.