Autoinflammatory & rare systemic diseases

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

Pediatr Rheumatol Online JPublished Descriptive survey of expert representatives

Authors' conclusion

Adherence to the 2021 EULAR/ACR recommendations for IL-1-mediated autoinflammatory diseases is achievable in Central and Eastern European countries.

Study context

Population
Representatives from 10 Central and Eastern European countries addressing autoinflammatory diseases, 202310 countries
Exposure
Current practice vs 2021 EULAR/American College of Rheumatology (ACR) recommendations for IL-1-mediated autoinflammatory diseases
Outcome
Diagnostic, treatment and follow-up options for IL-1-mediated autoinflammatory diseases compared with 2021 EULAR/ACR recommendations
Methodological detailsstructured collaborative effort, multinational, 10 Central and Eastern European countries
  • Structured collaborative effort
  • Multinational
  • 10 Central and Eastern European countries

Main finding

As reported in the abstract

  • Specialised centres for diagnosis and treatment in almost all countries; care by rheumatologists and/or clinical immunologists
  • Genetic testing available in all countries, with variation in test types
  • Massive parallel sequencing panels available in all countries; waiting for results 3 to 6 months in most cases
  • Availability of disease-specific laboratory assessments (e.g. S100 proteins) limited
  • IL-1 inhibitors available in all countries; licensing and reimbursement of anakinra and canakinumab differ by indication or diagnosis
  • Transition typically starts around age 18 or beyond in most countries; no structured transition programme in the majority

Observational data: associations, not effects.

Original publication

Diagnosis, management, and monitoring of interleukin-1 mediated diseases in Central and Eastern Europe: real-world data. Pediatr Rheumatol Online J. Published 23 May 2025. doi:10.1186/s12969-025-01105-3

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