ArticleOrphanet journal of rare diseases2026
Juvenile Inflammatory Rheumatism Real-Life Clinical Practice Strategies (JIR-CliPS) network: methodology and the development process.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
BACKGROUND AND
objectiveJuvenile-onset Inflammatory Rheumatisms (JIR) are rare systemic inflammatory diseases that begin in childhood or adolescence. Numerous recommendations have been developed to support physicians, but implementation may vary in real-life. The JIR-Clinical Practice Strategies (CliPS) project investigates clinical practices for JIR diseases. This article describes the rationale of the JIR-CliPS project to serve as methodological foundation for future publications on disease-specific findings.
methodsThe JIR-CLiPS network was launched in 2020 to collect CliPS in real-life on five medical conditions: lupus nephritis, vasculitis (including IgA vasculitis and Kawasaki disease), use of biologicals for hereditary autoinflammatory diseases, periodic fever with aphthous stomatitis, pharyngitis and adenitis (PFAFA) / systemic undefined recurrent fevers (SURF) syndrome, and Still's disease. Specific questionnaires were developed, covering physician demographics, disease-specific approaches, and local healthcare constraints.
resultsFrom June 2022 to April 2024, 534 physicians from 66 countries across six continents participated, completing in 1,193 questionnaires. Respondents were primarily pediatricians and rheumatology specialists, working both at universities and in local hospitals; although most participants reported at least 10 years' experience, younger doctors also took part. Participants from only a few countries shared the development of local or national JIR-specific recommendations, with variable awareness and adherence.
conclusionThe JIR-CliPS network has achieved broad international physician participation. Thanks to the knowledge gathered, a library with CliPS adapted to various local and country-specific constraints is currently under development, bridging the gap between published recommendations and achievable everyday practice. This robust methodology ensures a comprehensive and globally representative dataset for future disease-specific publications.
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