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About the network

The JIRcohort is an international network of specialists taking care of patients with Juvenile Inflammatory Disease. The network was created in 2013 by a group of french speaking doctors from Belgium, France and Switzerland. Since then the network has grown and is active in 87 centers from 11 countries. The data of more than 8'700 patients through 35'000 visits has been collected.

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The network is built around the JIR platform which allows each member to securely collect follow-up data of his patients. Each member can develop his own research project based on the data from the whole network.

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On the modular based platform, specific data can be collected for the following diseases: 

Auto-inflammatory disease / Dermatomyositis / Juvenile Inflammatory Arthritis (JIA) / Kawasaki disease / Lupus (SLE) / Still's disease / Uveitis

About the platform

The JIR platform is a secure web application developed as a research tool and as an electronic health record. Every center can decide to use it only for research purpose or also integrate it in the daily clinical work.

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The modular system allows to show specific data depending on the patient's center and disease.

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A patient mobile application can be linked to the JIR platform to give access to the patient to his health record. With the app he can also add medical information and answer questionnaires.

Network's organization

The JIRcohort is a project from the Fondation Rhumatismes-Enfants-Suisse, a Swiss non-profit foundation.

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The network is managed by a steering committee responsible for the global strategy and the finances and by a scientific committee responsible for the use of the data.

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The executive committee is composed by the following people:

Michaël Hofer, Lausanne, Switzerland (President)

Véronique Hentgen, Versailles, France (Vice President)

Alexandre Belot, Lyon, France

Béatrice Fonjallaz, Geneva, Switzerland (Allied health representatant)

Claire-Lise Schwok, Geneva, Switzerland (Patient's parent representant)

Helmut Wittkowski, Münster, Germany

Sophie Georgin-Lavialle, Paris, France

Sylvia Kamphuis, Rotterdam, Netherlands

Tim Niehues, Krefeld, Germany

Yan Guex-Crosier, Lausanne, Switzerland (Ophthalmologist representant)

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The scientific committee is composed by the following people:

Alexandre Belot, Lyon, France

Andreas Woerner, Basel, Switzerland

Aurélie Carbasse, Montpellier, France

Benoît Florkin, Liège, Belgium

Brigitte Bader-Meunier, Necker (Paris), France

Carine Wouters, Leuven, Belgium

Daniela Kaiser, Luzern, Switzerland

Elke Lainka, Essen, Germany

Isabelle Kone-Paut, Kremlin-Bicêtre (Paris), France

Michael Hofer, Lausanne, Switzerland

Pierre Quartier, Necker (Paris), France

Sophie Georgin-Lavialle, Tenon (Paris), France

Valérie Devauchelle, Brest, France

Véronique Hentgen, Versailles, France

Yan Guex-Crosier, Lausanne, Switzerland

Publications

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  • Baydoun S., Devauchelle-Pensec V., and al. :  Criteria Associated with Treatment Decisions in Juvenile Idiopathic Arthritis with a Focus on Ultrasonography: Results from the JIRECHO Cohort Springer Link, Nov 2022

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  • Abbara S., Georgin-Lavialle S. and al. : Vasculitis and familial Mediterranean fever: Description of 22 French adults from the juvenile inflammatory rheumatism cohort Frontiers in Medicine, Oct 2022​​

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  • Elhani I., Georgin-Lavialle S. and al.: Association between familial Mediterranean fever and multiple sclerosis: A case series from the JIR cohort and systematic literature review Multiple Sclerosis, May 2021

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  • Lacout C. , Georgin-Lavialle S. and al.: Helicobacter pylori in familial mediterranean fever: A series of 120 patients from literature and from france Helicobacter, February 2021

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  • Rollet-Cohen V., Hentgen V. and al.: Suboptimal vaccination coverage of recommended vaccines among French children with recurrent autoinflammatory fever syndromes: a study from the Juvenile Inflammatory Rheumatism cohort Clinical Rheumatology, January 2021

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  • Rossi-Semerano L., Jousse-Joulin S. and al.: Application of the OMERACT synovitis ultrasound scoring system in juvenile idiopathic arthritis: a multicenter reliability exercise Rheumatology, December 2020

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  • Hentgen V., Georgin-Lavialle S. and al.: Long-Term Follow-Up and Optimization of Interleukin-1 Inhibitors in the Management of Monogenic Autoinflammatory Diseases: Real-Life Data from the JIR Cohort Frontiers in Pharmacology, January 2021

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  • Bourguiba R., Georgin-Lavialle S. and al.: Clinical course of COVID-19 in a cohort of 342 familial Mediterranean fever patients with a long-term treatment by colchicine in a French endemic area. Annals of Rheumatic Diseases, November 2020

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  • Bourguiba R., Georgin-Lavialle S. and al.: Periodic fever syndrome associated with mutations in the TNF type 1 receptor gene: A differential diagnosis of familial Mediterranean fever that should not be overlooked in patients of Mediterranean origin. La Revue de Médecine Interne, October 2020

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  • Pouletty M., Melki I. and al. : Paediatric multisystem inflammatory syndrome temporally associated with SARS-CoV-2 mimicking Kawasaki disease (Kawa-COVID-19): a multicentre cohort. Annals of Rheumatic Disease, June 2020

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  • Theodoropoulou K., Hofer M. and al.: Increased Prevalence of NLRP3 Q703K Variant Among Patients With Autoinflammatory Diseases: An International Multicentric Study. Frontiers, May 2020

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  • Dingulu G., Hentgen V. and al.: Validation of the new classification criteria for hereditary recurrent fever in an independent cohort: experience from the JIR Cohort Database. Rheumatology, March 2020

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  • Dumaine C., Hentgen V., and al.: Infectious adverse events in children with Juvenile Idiopathic Arthritis treated with Biological Agents in a real-life setting: Data from the JIRcohorte. Joint Bone Spine, January 2020

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  • Cabrera N., Belot A., Hofer M. and al.: Safety of biological agents in paediatric rheumatic diseases: A real-life multicenter retrospective study using the JIRcohorte database. Joint Bone Spine, September 2018

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  • Akre C., Suris J-C., Hofer M. and al.: Building a transitional care checklist in rheumatology: A Delphi-like survey. Joint Bone Spine, July 2018

Ongoing projects

  • Study of clinical features of patients with cryopyrin associated periodic syndromes (CAPS): Study the prevalence of finger clubbing among patients with CAPS. Project promoter: Sophie Georgin-Lavialle, Tenon Hospital, Paris, France

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  • Anti-IFN-alpha2 AAbs in a french multicentric cohort of pediatric patients with SLE: Assess the presence of anti-IFN-alpha2 AAbs in a french multicentric cohort of pediatric patients with SLE. Project Promoter: Alexandre Belot, Hospices Civils de Lyon, Lyon, France

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  • Remission of juvenile idiopathic arthritis (JIA)-associated uveitis: Time to remission of JIA-uveitis after introduction of anti-TNF therapies. Project Promoter: Yan Guex-Crosier, Hôpital Jules-Gonin, Lausanne, Switzerland

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  • Analysis of treatment approaches in Juvenile Dermatomyositis patients: Description of inflammatory myopathies within the JIR cohorte, i.e., clinical characteristics, treatment approaches and main outcomes (achievement of remission or low disease activity, and accrual of disease damage). Project promoter: Helmut Wittkowski, Universitätsklinikum Münster, Münster, Germany

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  • laris® Vie Réelle: This project aims to evaluate the real-life conditions of use of ILARIS in patients with FMF, MKD or TRAPS in France. This project was initiated by Novartis at the request of the HAS Transparency Commission in the context of an application for an extension of the indication for Ilaris®. This project will result in a report transmitted to the HAS Transparency Commission. Project Promoter: Novartis, France​​