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

Good Practice Sharing Event 2024 – 2nd Edition

This important event has been organized by this ERN ReCONNET Working Group on Research and Quality of Care led by Dr. Rosaria Talarico, our Scientific Coordinator, and ePAG Ilaria Galetti.
Last year, the event was a great success and for this new edition we look forward to discuss with all the participants the following topics:

• Introduction from the Chairs of the ERN ReCONNET Research and Quality of Care Working Group. R. Talarico, I. Galetti.
• Nurse clinics organisation for wound care and pregnancy management. S. Gori, V. Venturini, M. Mosca, R. Talarico (AOU Pisa).
• The ERN ReCONNET Relapsing Polychondritis (RP) Quality of Life (RP-QoL) assessment tool. L. Arnaud (Hôpitaux Universitaires de Strasbourg).
• ScleroNet: A regional Systemic Sclerosis (SSc) management network. P. Canziani (Presidente GILS), C. Bellocchi (Foundation IRCCS Ca’ Granda Ospedale Maggiore Polyclinic – Milan), C. Campochiaro (IRCCS San Raffaele – Milan).
• The institutional “response” to the ERN system, the Padua Model. G. Perilongo (AOU Padua).
• Practical guidelines for the diagnosis and management of the Non-vascular Ehlers-Danlos Syndromes (EDS). G. Guichou (Hôpital Raymond Poincaré).

Agenda – Event: Sharing Good Practices Initiative (PDF)

Rosaria Talarico
(AOU Pisana)

Ilaria Galetti
(Federation of european scleroderma associations, GILS)