Fondation RES, Route de la Plantay 87, 1163 Etoy, SWITZERLAND
Contact person: Francois Hofer

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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 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.

 

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.

The steering committee is composed by the following people:

Michaël Hofer, Lausanne, Switzerland (President)

Alexandre Belot, Lyon, France

Andreas Woerner, Basel, Switzerland

Béatrice Fonjallaz, Geneva, Switzerland (Allied health representatant)

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

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

 

Publications

1) Akre C., Suris J-C., Hofer M. et al.: Building a transitional care checklist in rheumatology: A Delphi-like surveyJoint Bone Spine, Juillet 2018

2) Cabrera N., Belot A., Hofer M. et al.: Safety of biological agents in paediatric rheumatic diseases: A real-life multicenter retrospective study using the JIRcohorte database. Joint Bone Spine, Septembre 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.

The first step is to 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.

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.

 

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:

  • Public research Grants

  • Private donations

  • Public institutions donations

  • Pharmaceutical compagnies unrestricted grants

  • Pharmaceutical compagnies service agreements

  • Event benefits

  • Online training course

 

JIR network

The JIR cohort is actually active in the following 8 countries

  • Armenia

  • Austria

  • Belgium

  • France

  • Germany

  • Morocco

  • Poland

  • Switzerland​​