ERN ReCONNET

Research and Quality of care WG

Information about the Research and Quality of care WG

Research and Quality of Care

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

 

SAVE THE DATE: THURSDAY MAY 30TH 2024, FROM 15:00 TO 17:00 CEST
ERN RECONNET INVITES YOU ALL TO JOIN OUR EVENT!



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 GroupR. 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)

Registration is open and free at this link.

Webinars

WG Chairs

APS Angela Tincani (Civil Hospital – Brescia)
Maria Bruzelius (Karolinska Universitetssjukhuset)
EDS Marco Castori (Fondazione IRCCS Casa Sollievo della Sofferenza)
Karelle Benistan (APHP, Hôpital Raymond Poincaré)
IgG4-RDs  Andreas Ramming (Universitätsklinikum Erlangen)
Fernando Martínez Valle (Hospital Universitari Vall d’Hebron)
IIMs Albert Selva O’Callaghan (Hospital Universitari Vall d’Hebron)
Tobias Ruck (Universitätsklinikum Düsseldorf)
MCTD T.W.J.Huizinga (Leiden University Medical Center)
Jeska de Vries-Bouwstra (Leiden University Medical Center)
RP Zahir Amoura (APHP, Hôpital Pitié-Salpêtrière)
Laura Damian (County Emergency Clinical Hospital Cluj)
SLE Katrien de Vusser (UZ Leuven)
Josefina Cortes Hernandez (Hospital Universitari Vall d’Hebron)
SS Arjan Vissink (University Medical Centre Groningen)
Chiara Baldini (AOU Pisana)
SSc David Launay (CHRU de Lille)
Alexandre Voskuyl (Amsterdam UMC)
UCTD Savino Sciascia (A.S.L. Torino – Hub S. Giovanni Bosco)
Patricia E. Carreira (Hospital Universitario 12 de Octubre)
ePAGs Jeanette Andersen (Lupus Europe)
Coralie Bouillot (Sjögren Europe)
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