Менеджмент пацієнтів із ювенільним ідіопатичним артритом

Abstract

Juvenile Idiopathic Arthritis (JIA) is considered one of the most severe and common rheumatic diseases in childhood. The hallmark signs of JIA are inflammation of one or more joints for more than 6 weeks in the absence of other possible causes of arthritis. Given that the etiology of JIA is uncertain, its pathogenesis multifactorial, and the experience with certain groups of drugs is limited, it is important to have consolidated national and international registries of patient information demonstrating experience in monitoring children with JIA. The aim of the analysis of literature sources on the topic of accumulation and exchange of data on patients with JIA was to summarize and interpret data from existing national and international registries. During the analysis, national registries of Sweden, the United Kingdom, Germany, and South America were analyzed, as well as the international Pharmachild project, which is the most comprehensive and informative database of patients with JIA. The development of local registries of patients with JIA remains relevant today, as it will improve the quality of monitoring such children and enable the identification of regional peculiarities in the course of the disease. The establishment of international trial networks, such as PRINTO (Paediatric Rheumatology International Trials Organisation) and PRCSG (Pediatric Rheumatology Collaborative Study Group), the definition of recognized and standardized outcome measure and assessments of improvements, the validation of quality of life instruments, and the adoption of appropriate legislative measures have created the main prerequisites for better assessment of pediatric rheumatic diseases in the future. No conflict of interests was declared by the authors.