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. 2025 May 23;23(1):56.
doi: 10.1186/s12969-025-01105-3.

Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data

Marija Jelusic #  1 , Mario Sestan #  2 , Natasa Toplak  3 , Constantin Tamas  4 , Jelena Vojinovic  5 , Zbigniew Zuber  6 , Beata Wolska-Kusnierz  7 , Mihaela Sparchez  8 , Milos Jesenak  9 , Skirmante Rusoniene  10 , Valda Stanevica  11 , Pavla Dolezalova  12   13 , Liora Harel  14 , Yosef Uziel  15 , Marco Gattorno  16
Affiliations

Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data

Marija Jelusic et al. Pediatr Rheumatol Online J. .

Abstract

Background: Global healthcare disparities, stemming from organizational differences in healthcare systems, lead to variable availability and funding, resulting in a gap between recommended and implemented practices for interleukin (IL)-1-mediated autoinflammatory 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 effort was organized with representatives from 10 Central and Eastern European countries to address autoinflammatory 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 autoinflammatory 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 offered. Massive parallel sequencing panels for autoinflammatory diseases are available in all countries, with waiting periods for results ranging from 3 to 6 months in most cases. The availability of disease-specific laboratory assessments, such as S100 proteins, is limited. IL-1 inhibitors are available in all countries, but there are differences in practices regarding the licensing and reimbursement of anakinra and canakinumab based on specific 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 autoinflammatory 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 efforts, with the overarching goal of identifying new patients with autoinflammatory diseases.

Keywords: Autoinflammatory diseases; Diagnosis; Interleukin-1 mediated diseases; Monitoring; Patient-reported outcomes; Transition; Treatment.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Not applicable. Consent for publication: Not applicable. Competing interests: MJ received speaker fee from Novartis. MS and VS declare that they have no conflicts of interest. NT received speakers'honoraria and a travel grant from Novartis. CT received speaker fees and travel grants from Novartis. JV received speaker fees from Novartis, Eli Lilly and Pfizer. ZZ received speaker fees and travel grants from AbbVie, Novartis and Sobi. MSp received speaker fees and travel grants from Novartis and Sobi. MJes received speakers'honoraria from Novartis and Sobi, served as advisory board member for Novartis, Sobi, and AbbVie; and received travel grants from Novartis. SR received travel grants from Novartis. YU received speaker fee from Novartis, Sobi, Pfizer and Abbvie. MG received consultancies and speaker fees from Novartis, Sobi, Boehringer, Kiniksa and Fresenius-Kabi.

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