top of page
JIR_cohort.png

International clinical research on Juvenile Inflammatory diseases

A secure platform to transform routine clinical data into collaborative research projects, simply and in full regulatory compliance.

Focus on science. JIR takes care of the rest.

Security & compliance

Secure and compliant Health Data Warehouse, aligned with international ethical and regulatory standards.

International research

A multicenter network of clinicians and researchers collaborating on international projects.

Modular platform

Dedicated modules for major paediatric-onset inflammatory and autoinflammatory diseases.

Continuous support

​Scientific, technical, and regulatory support at every step.

Key figures

114+

participating centers

countries

14

patients​

>15 000

publications

30+

MapChart_Map (3).png

A robust scientific,ethical, and regulatory framework

LEGAL

Fondation RES acts as the data controller and provides standardised legal document templates to support all regulatory and contractual steps required for each project.

SCIENTIFIC

The Scientific Data Access Committee (SDAC) reviews and validates all projects and provides guidance on scientific design and project structuring.

OPERATIONAL

The JIR team manages the platform, data security, and user support, and provides hands-on assistance for:

  • protocol development,

  • statistical analysis plan drafting,

  • and data preparation prior to analysis.

From clinical data to scientific publication

A modular structure combining a transversal core
and disease-specific modules

1. Transversal module (for all patients) :  shared core dataset applied to all patients, independent of diagnosis : 

Demographic data

Diagnostic information

Treatments and treatment history

Adverse events

Complementary investigation

Comorbidities

2. Disease specific modules : dedicated modules including diagnostic criteria, disease activity scores, and longitudinal clinical and biological follow-up parameters.

Autoinflammatory diseases

Juvenile idiopathic arthritis

Still’s disease

Dermatomyositis

Kawasaki disease

Systemic Lupus erythematosus

Uveitis

Ongoing projects

Note : Patients in our database who prefer not to participate in specific projects are encouraged to communicate their choice to their physicians (please mention the project name). We respect and support your decisions regarding project involvement. Thank you for being part of our valuable medical research community."

Cr-FMF: Oporność na kolchicynę w rodzinnej gorączce śródziemnomorskiej

Projekt wieloośrodkowy

Szpital w Wersalu
Dr Veronique Hentgen, dr Saverio La Bella

jNPSLE młodzieńczy neuropsychiatryczny toczeń rumieniowaty układowy: badanie epidemiologiczne

Projekt wielocentryczny

APHP – Trousseau
Isabelle Melki, Aurélia Carbasse, Stéphanie Antoun

Projekt FOREUM

Eve Smith i Rebecca Sadun z Uniwersytetu w Liverpoolu
Alexandre Belot (odpowiedzialny za dane JIRcohort)

Last publications

Symptom course of PFAPA syndrome

Pediatric Rheumatology

Dec 2025

Labouret M., Hentgen V., and al.

PFAPA

Predictors of relapse after withdrawing biotherapies in children with inactive juvenile idiopathic arthritis: a retrospective cohort study of the JIR cohort

Pediatric Rheumatology

Nov 2025

Jallot V., Dusser P., and al.

JIA

Indications, efficacy and safety of rituximab in childhood-onset systemic lupus erythematosus: a retrospective study of the JIR cohort

Rheumatology

April 2025

Cognard J, Belot A, and al.

Lupus

An international reference network for Juvenile Inflammatory Diseases

Created in 2013 by specialized European centers, the JIR Cohort (Juvenile Inflammatory Rheumatism) is now an international reference network dedicated to research on inflammatory and autoinflammatory diseases in children.

It enables the reuse of routine care data within a secure, harmonized, and well-governed framework.

JIR Support team

Francois Hofer.png

Francois Hofer

Data and project management

Seb Cavelot.png

Sebastien Cavelot

Project Manager

Organigramme

A trusted framework for collaborative research

The JIR Cohort infrastructure — including the technical platform, legal framework, and operational team — is funded by Fondation RES.

Operational costs are covered through an overhead applied to funded research projects, ensuring long-term sustainability while maintaining access to a robust and secure infrastructure.

PIE Chart JIR Cohort.png

Estimated operating costs 2024–2025 : 190 000 CHF

Join the JIR Cohort

Contribute to collaborative, secure research that advances knowledge and improves patient care.

bottom of page