JIR-CliPS Porto Meeting – Progress, Exchange, and the Road Ahead

“Porto was both a moment of reflection and projection – a chance to measure how far we’ve come, and to look together toward what comes next.” Francois Hofer, Grant Holder Scientific Representative

Porto, October 2–3, 2025 – 42 active Members of the JIR-CliPS network met for two days of presentations, discussion, and planning, marking an important step in this final year of our COST Action CA21168.

Portugal, Switzerland, France, Germany, Italy, Türkiye, Greece, Lithuania, UK, Croatia, Netherlands, Georgia, Moldova, Slovenia, Ukraine, Tunisia, and Israel…

WG leaders, Communication, library and registry coordinators, several generations of STSM grantees amd newly involved participants...

Seniors and juniors, pediatric and adult rheumatologists, immunologists, and nephrologists...

We all came together, united by the same collaborative spirit that drives our network.

A Very Intense and Fruitful Scientific Afternoon

The first afternoon was entirely dedicated to scientific exchange. Each Working Group (WG) presented updates from their 2 main ongoing projects – most of them based on work completed during the Short-Term Scientific Missions (STSMs) in Lausanne – followed by open discussion and feedback from the other WGs. It was a very intense and productive session, with constructive exchanges and concrete plans for the months ahead.

Among the many highlights:

1. FMF and colchicine resistance (WG3 – Dr Saverio La Bella, STSM grantee 2025): an analysis across registries revealing important variations in colchicine dosing practices and access to biologics. Discussion focused on linking dosage and outcomes and on understanding geographical disparities in treatment approaches.

2. CAPS, MKD and TRAPS (WG3 – Dr Ana Luiza Cunha, STSM grantee 2025): preliminary results confirmed wide differences in management practices. The group agreed on the need for larger, more homogeneous datasets to ensure robust conclusions.

3. PFAPA studies (WG4 – Dr Gvantsa Jajanidze and Dr Ines Cherif, STSM grantees 2025): two complementary projects explored tonsillectomy practices and diagnostic reasoning. Their findings revealed how differently physicians approach PFAPA diagnosis and treatment across countries, and introduced the innovative idea of a “complexity index” to adjust for national specificities.

4. Still’s disease (WG5 – Dr Maurine Jouret (active member) and Oya Koker, STSM grantee 2025): presentations on biomarker use and treatment strategies worldwide showed how access, cost, and national guidelines influence clinical decisions. These analyses will form the basis of future recommendations and comparisons by resource setting.

5. Vasculitis and Lupus nephritis (WG2 – Ausra Snipaitiene,Grant coordinator and Nastasia Kifer, STSM grantee 2024 and WG 1 Giedre Januškevičiūtė, STSM grantee 2025, and Valentina Natoli STSM grantee 2023&2025): studies highlighted significant variability in diagnostic and therapeutic approaches, underlining once again the need for harmonized practices and shared definitions.

This first day perfectly illustrated the added value of the JIR CliPS network: a space where data are discussed collectively, where real life clinical practices are compared openly, and where collaboration accelerates progress.

The Human Dimension Behind the Work

Beyond the presentations, Porto was also about people. Meeting in person after months of virtual exchanges brought renewed energy and a sense of connection. After an intense first day, we all shared a delicious Portuguese dinner, celebrating the birthday of one of our WG leaders, Dr. Véronique Hentgen, and enjoying the hospitality of our local colleagues.

The Final Year of COST Action

Day 2 opened with Working Group discussions to refine timelines and priorities, followed by a joint session to reflect on the Roadmap for this final COST year –  our journey to Istanbul last meeting in June 2026 and the milestones ahead :

1. Webinar on Still’s Disease – November 17, 2025

2. Winter School on Vasculitis – March 13–14, 2026 (Hybrid format)

3. Final STSMs – May 2026

4. Final COST Meeting – Istanbul, June 18–19, 2026

The selection of the last STSM grantees is currently in progress, and the results will soon be announced. These future grantees will play a crucial role in finalizing the key projects of each Working Group before the COST Action concludes.

Looking Beyond Porto

The discussions on Day 2 also looked to the future: what happens after COST? There was unanimous agreement that the CliPS collaboration must continue. The network has created a dynamic and trusted environment that goes far beyond data sharing – it has built a true Worldwide community of experts in pediatric rheumatology.

Dr Nastatia Kifer, Dr Ricardo Craveiro Costa and Dr Jurgita Marciulynaite, former STSM grantees shared their personal experiences. Emotions were felt throughout their testimonies: heartfelt, sincere, and full of gratitude. They thanked their mentors, experts and STSM coordinators as well as COST for the invaluable learning opportunities they had been given.

The group begun to explore new funding possibilities and future organizational models to sustain this collaboration and carry forward the scientific momentum.

 A warm thank-you to Dr. Mariana Rodrigues and Dr. Francisca Aguiar for welcoming us to their beautiful city.

Stay tuned for this last Year !