JIR Cohorte

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JIR Cohorte

Improve care for patients with a Juvenile Inflammatory Rheumatism through research and training

More than 100 different centers from 12 countries develop clinical research projects through the JIRcohorte network. A central database allows every center to document their patients data and access to international data for their own research. The data of more than 10'000 patients through 50'000 visits has already been collected. General data is collected for all patients included in the registry (demographics, diagnosis, comorbidities, genetics, vaccine, treatments, adverse events). For the following diseases a specific module allows to collect specific clinical manifestations, laboratory values and disease activity measures:
• Juvenile Idiopathic Arthritis (JIA) -> 3200 patients included
• Systemic Juvenile Idiopathic Arthritis (sJIA) -> 500 patients included
• Juvenile Dermatomyositis -> 100 patients included
• Systemic Lupus Erythematous (SLE) -> 500 patients included
• Kawasaki / MIS-C -> 750 patients included
• Autoinflammatory diseases -> 2200 patients included
• Uveitis -> 1800 patients included

In addition to patient data, the real life Clinical Practice Strategies from the physicians are also collected with the goal to learn from the experience of physicians from all over the world. The network is not only active in research, but also organises training events through the JIR Academy. A yearly Winter School is organized since 2017 in the Swiss Alps in a hybrid format allowing participants from the 6 continents to participate. Regular virtual training events are also organized and can be viewed on the JIR Academy platform (www.jiracademy.org).

14/03/2025

📢 And the JIR Winter School on Lupus has started! ❄️ Kicked off by Pr Michael Hofer, Pr Sylvia Kamphuis and Dr Lovro Lamot. Follow live updates on social media!

04/03/2025

🌍 300+ registrations & counting! 🗺️

📅 D-10 until the JIR Winter School kicks off on March 14th!
🎤 79 countries represented among our audience & speakers—proof of the truly global reach of this event!

Is your country on the map? If not, there’s still time to join! ⏳ Register now and be part of this international exchange in pediatric rheumatology!

🔗 https://www.jircohorte.org/winterschool

04/03/2025

JIR Winter School 2025 - LUPUS
🌍 300+ registrations & counting! 🗺️
📅 D-10 until the JIR Winter School kicks off on March 14th!
🎤 79 countries represented among our audience & speakers—proof of the truly global reach of this training!
Is your country on the map? If not, there’s still time to join!
⏳ Register now and be part of this international exchange in pediatric rheumatology!
https://www.jircohorte.org/winterschool

28/02/2025

🌟 New publication - JIR CliPS !!! 🌟
Congratulations to Dr. Ezgi Deniz Batu and the JIR CliPS WG4 PFAPA/SURF team for their latest publication in Rheumatology on Corticosteroid use in PFAPA syndrome: clinical practice data from the JIR-CliPS Survey Study, along with a comprehensive literature review.
A great step forward in understanding and improving treatment strategies! 👏
🙏 Special thanks to COST Association - European Cooperation in Science and Technology for their support to the CliPS initiative CA21168.
🔗 Publication here : https://pubmed.ncbi.nlm.nih.gov/39924747/

14/02/2025

🌍 JIR Academy Forum February : Another Engaging Clinical Case Discussion!
Tuesday's session brought together 26 physicians from around the world, with 2 interesting challenging cases being discussed:
1️⃣A 10-year-old boy with amputated fingers, recurrent vomiting, and hypertension📍 Presented by a Dr Tiara Nien Paramita from Indonesia
2️⃣ A 5-year-old girl initially misdiagnosed with JIA, later confirmed as Shulman’s fasciitis through histopathological findings📍Presented by Dr Dr Safa Ammar Boudjelal from Algeria

The discussion highlighted diagnostic challenges, including difficulties in patient follow-up. The international group provided insights and suggestions. We hope this exchange was useful for all participants and look forward to continuing these enriching discussions!

📅 Mark your calendars!
Our next clinical case discussion will take place on Tuesday, March 11th.
🔗 Register now to join us on our website : https://www.jircohorte.org/infos-evenement/jir-academy-forum-case-discussions-march

Thank you and see you at the next forum! 🙌

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