A project of the Fondation RES
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.
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
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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.
Network's organization
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.
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SCIENTIFIC COMMITTEE :
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)
EXECUTIVE COMMITTEE:
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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Publications
Ongoing projects
Study of clinical features of patients with cryopyrin associated periodic syndromes (CAPS)
Study the prevalence of finger clubbing among patients with CAPS
Sophie Georgin-Lavialle, Tenon Hospital, Paris, France
Study of clinical features of patients with cryopyrin associated periodic syndromes (CAPS)
Study the prevalence of finger clubbing among patients with CAPS
Sophie Georgin-Lavialle, Tenon Hospital, Paris, France
Study of clinical features of patients with cryopyrin associated periodic syndromes (CAPS)
Study the prevalence of finger clubbing among patients with CAPS
Sophie Georgin-Lavialle, Tenon Hospital, Paris, France
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.
1
Get the authorization
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.
2
Collect data
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.
3
Participate to a project
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.
1
Get the approval
Get the approval from the JIR scientific committee.
To do so please fill in the attached form and send it to the JIR team.
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.
2
Prepare data & Contact JIR members
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.
3
Send your outputs
All the outputs from your project (abstract / thesis / article / congress presentation) must be sent to the JIR team.
About Finance
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:
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Public research Grants
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Private donations
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Public institutions donations
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Pharmaceutical compagnies unrestricted grants
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Pharmaceutical compagnies service agreements
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Event benefits
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Online training course
