Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe

Background: Global healthcare disparities, stemming from organizational diferences in healthcare systems, lead to variable availability and funding, resulting in a gap between recommended and implemented practices for interleukin (IL)-1-mediated autoinfammatory diseases. We aimed to assess diagnostic, treatment and follow-up options for these diseases in Central and Eastern European countries, comparing them with the 2021 recommendations of the European Alliance of Associations for Rheumatology (EULAR)/American College of Rheumatology (ACR). Methods: In 2023, a structured collaborative efort was organized with representatives from 10 Central and Eastern European countries to address autoinfammatory diseases. The discussion focused on potential strategies to achieve the goals mentioned above. Results: Almost all the participating countries have specialized centers for the diagnosis and treatment of autoinfammatory diseases and the care is provided either by rheumatologists and/or clinical immunologists. Genetic testing is available in all countries, but there is variation in the types of tests ofered. Massive parallel sequencing panels for autoinfammatory diseases are available in all countries, with waiting periods for results ranging from 3 to 6 months in most cases. The availability of disease-specifc laboratory assessments, such as S100 proteins, is limited. IL-1 inhibitors are available in all countries, but there are diferences in practices regarding the licensing and reimbursement of anakinra and canakinumab based on specifc indications or diagnoses. The age at which the transition process begins varies, but in most countries, it typically starts around the age of 18 or beyond and in majority of the participating countries there is no structured transition program. Conclusions: Adherence to the 2021 EULAR/ACR recommendations for IL-1-mediated autoinfammatory diseases is achievable in Central and Eastern European countries. Determining the prevalence and incidence of these diseases in this region remains a persistent challenge for future research eforts, with the overarching goal of identifying new patients with autoinfammatory diseases.