O potrzebie stworzenia polskiego rejestru chorych na stwardnienie rozsiane

Abstract

Multiple sclerosis (MS) is the most common cause of neurological disability of young people. It is estimated that 40 000-60 000 people in the country suffer from MS, and approximately 2000 new cases are diagnosed annually. These are, however, estimated data and require verification by nation-wide research. Results published so far concern only certain regions of Poland. It is also vital to precisely describe the needs of patients in terms of immunomodulating treatment and to perform detailed pharmacoeconomical analysis. In order to estimate basic epidemiological parameters there is a need of creating, in imitation of many other countries, a national register of MS patients which would concentrate all assets concerning MS around this project. The article presented the most important of American and European databases and explained the basis of the Polish register of MS patients, which is already functioning in one of the regions.

Self-reported quality of life in multiple sclerosis patients: preliminary results based on the Polish MS Registry

“…It is estimated that there are 40,000–50,000 such patients in Poland, while the prevalence of MS is estimated to be between 37 and 91 cases per 100,000 citizens 4. In Poland, no epidemiological studies or systematic studies of quality of life (QoL) that include the overall population of the country have been conducted 5. Most published studies from Poland were performed many years ago and provided data pertaining to only 10% of Poland’s area 6–14.…”

The needs and the condition of multiple sclerosis medical care in Poland

“…Na podstawie średnich wartości wskaźnika zachorowalności określonego dla Polski i Europy można szacować, że corocznie pojawia się w Polsce maksymalnie około 2100 nowych chorych, z czego około 1700-1800 będzie wymagało włączenia leczenia immunomodulacyjnego (Potemkowski, 2013). Brak rzeczywistych danych oznacza konieczność objęcia całego kraju rejestrem chorych na SR, którego organizacyjne podstawy zostały opracowane i wdrożone w województwie świętokrzyskim z osobistej inicjatywy dra W. Broli przy wsparciu konsultanta krajowego w zakresie neurologii prof. D. Ryglewicz (Brola et al, 2014). Obecnie rejestr ten korzysta z doświadczeń innych europejskich rejestrów i tak jak one stopniowo obejmuje pozostałe regiony kraju, zdobywając coraz więcej współpracowników.…”