Complete follow-up data collection allows the physician to get a better understanding of the long term mechanisms in Juvenile Inflammatory Rheumatism.
How to participate
To participate to the JIRcohort, your physician must be a JIR member. If he is not yet a member of our network, you can suggest him to join us (how to become a JIR member). You must then sign an informed consent to allow your physician to add your medical information on the JIR platform. Your physician should inform you about this study and give you an informed letter adapted to your age (0 - 10 years (parents) / 11 - 14 years / 15 - 18 years / adult).
The following diseases are studied by the JIR network:
Juvenile Idiopathic Arthritis (JIA)
Still's disease / Systemic JIA
Autoinflammatory diseases: CAPS / FMF / HIDS / TRAPS / PFAPA
Systemic Lupus Erythematous (SLE)
Risks and data protection
The JIRcohort is an observational study. This means that we record your medical data, but there will be no change in your medical follow-up. Therefore there is no list to participate to this study.
Your identity is pseudonymized (identified by a code) by the JIR platform which means that no JIR member will have access to your identity except for your physician. The patient's name will never be published and they will never be accessible for scientific projects.
The JIR platform respects the European data protection rules (GDPR).
If you want to have all your data deleted from the JIR platform, please contact your physician.
The JIR mobile App is only available for centers using the JIR platform as their Electronic Health Record. You can ask your physician if the app is available for you. For any question you can contact the JIR team.
The JIR mobile application has been developed to improve data transmission between the patient and his medical team.
JIR app functionalities:
Access your medical record with up to date informations
Inform your physician before your next follow-up visit (medical questionnaires)
Conditions to access the app:
The access to the app is given by the physician if the following conditions apply.
Your center uses the JIR platform as an electronic health record and received legal autorisation from the local authorities
You must have signed the JIRcohort consent form
You gave your mobile phone number to your physician to receive the activation SMS.
Centers actually using the JIR app:
Consultation Romande d'immunologie-Rhumatologie Pédiatrique in Aigle, Geneva, Lausanne, Neuchatel and Sion (Switzerland)
More informations about the mobile app on the following link (only in french for the moment).