Research and Quality of care WG

The main objectives of the Research and Quality of Care WG are to:

• Contribute to innovation and research in the field of rCTDs by encouraging research across the ERN ReCONNET
• Promote existing good practices in diagnosis and the delivery of high-quality care to rCTDs patients

In order to reach these objectives, the WG on Research and Quality of care supports and manages, together with the ERN ReCONNET Coordination Team, the activities of the Network related to research and quality of care. In particular, the WG:

• Promotes research activities aimed at improving the equity and the quality of care across Europe in rCTDs patients, taking also into consideration unmet needs
• Supervises and provides advice to the ERN ReCONNET in the field of research and quality of care
• Promotes good practices exchange concerning diagnosis and the delivery of high-quality healthcare for patients with rCTDs
• Promotes protocols for the transition of care in rCTDs patients
• Promotes research protocols for cross-actional activities
• Performs a state of the art on existing Cross-border procedures for rCTDs patients in place within ERN centres
• Supports the development of multi-disciplinary cost-effective patients’ pathways reference models on rCTDs by applying the RarERN Path methodology
• Supports the development, appraisal and update of Clinical Practice Guidelines and Clinical Decision Support Tools
• Establishes collaboration with other initiatives

Rosaria Talarico
(AOU Pisana)

Ilaria Galetti
(Federation of european scleroderma associations, GILS)

Good Practice Sharing Event 2025 – 3rd Edition

Following the success of the previous editions, the 2025 Good Practice Sharing edition offers another valuable opportunity to highlight good practices already implemented across different centres within our Network—and to promote their adoption in other settings.

The session was open to everyone, both inside and outside ERN ReCONNET, including healthcare professionals, researchers, patient organisations, and all those interested in rare and complex connective tissue and musculoskeletal diseases.

This initiative aims to encourage the exchange of experiences, support cross-country collaboration, and contribute to improving care for people living with rCTDs.

📄 Agenda – ERN ReCONNET Sharing Good Practice Event 2025 edition

1 December 2025 – 15:00–17:00 CET

• 15:00 – 15:05 “Introduction” – R. Talarico, I. Galetti
• 15:05 – 15:20 “CPMS for national-level clinical case discussions” – V. Smith, Y. Piette
• 15:20 – 15:35 “Personalized Integrative Care for Immune-Mediated Rare Diseases” – G. Moroncini
• 15:35 – 15:50 “Microcirculatory Evaluation in CTDs by Capillaroscopy” – M. Cutolo
• 15:50 – 16:05 “Integration and ERNs: A Model for Improved Rare Disease Care” – A. Tincani
• 16:05 – 16:20 “From Effective Communication to Good Practice” – S. Ferrigno
• 16:20 – 16:35 “Red Flags Methodology” – R. Talarico
• 16:35 – 16:50 “LupusGPT” – Z. Karakikla-Mitsakou
• 16:50 – 16:55 “Closing Remarks” – R. Talarico, I. Galetti

🎬 Watch Previous Editions

• 2024 Edition: https://youtu.be/3irfo_UV7bc

• 2023 Edition: https://youtu.be/8Kiylz8VpNU