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 75 centers from 8 countries. The data of more than 5'700 patients through 23'000 visits has been collected.
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.
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.
The modular system allows to show specific data depending on the patient's center and disease.
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.
The JIRcohort is a project from the Fondation Rhumatismes-Enfants-Suisse, a Swiss non-profit foundation.
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.
The steering committee is composed by the following people:
Michaël Hofer, Lausanne, Switzerland (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
Véronique Hentgen, Versailles, France
Yan Guex-Crosier, Lausanne, Switzerland (Ophthalmologist representant)
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
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
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
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
Hentgen V., Georgin-Lavialle S. and al.: IL-1 inhibitor use in recurrent fever syndromes: a study on dosing from the JIR cohort. Frontiers in Pharmacology, October 2020
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
Theodoropoulou K., Hofer M. and al.: Increased Prevalence of NLRP3 Q703K Variant Among Patients With Autoinflammatory Diseases: An International Multicentric Study. Frontiers, May 2020
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
Fayand A., Georgin-Lavialle S. and al.: Do we need the PFAPA syndrome in adults with non-monogenic periodic fevers? Annals of the Rheumatic Disease, February 2020
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
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
How to become a JIR member
The JIR network is open to all specialists taking care of at lease 1 patient with a Juvenile Inflammatory Rheumatism.
The first step to become a member is to get the authorization from the legal authorities (Ethic committee) for your center. The JIR team can assist you during this process.
Once the authorizations are received your center will be created on the JIR platform and your account will be created.
As soon as you have collected the data of 1 of your patients you will become a JIR member.
The data collection is voluntary and there is no minimum dataset which must be completed. The network does not finance data collection except for specific projects.
For every research project for which at least one of your patients fits to the inclusion criteria, you will be contacted by the JIR team and informed about the conditions to participate to the project (data to collect / available support for data collection). With these informations you can decide to participate to the project or not.
The JIR members can get special discount for the JIR academy events and online material.
How to develop my own JIR research project
You must be a JIR member to be able to develop your own research project with the data from the JIRcohort.
If your project only requests your center's data, you can directly export it through the JIR platform without the approval from the JIR scientific committee.
Once your project is approved, the JIR team can assist you in the preparation of the data and help you to contact the JIR members with interesting patients for your project.
All the outputs from your project (abstract / thesis / article / congress presentation) must be sent to the JIR team.
The JIRcohort is a project of the Fondation Rhumatismes-Enfants-Suisse, which is a Swiss private foundation. Its goals are to support research, training and clinical activities in pediatric rheumatology.
The JIRcohort is an ongoing project with no fixed duration. Therefore, every year, new funding must be found by the JIR steering committee to pay for fixed and development costs.
Funding is collected from multiple sources:
Public research Grants
Public institutions donations
Pharmaceutical compagnies unrestricted grants
Pharmaceutical compagnies service agreements
Online training course