ERN ReCONNET
Registries and eHealth WG
Information about the Registries and eHealth WG
Registries and eHealth
The main objectives of the Registries and eHealth WG are:
- Strengthen the provision of highly specialised multi-disciplinary cross-border virtual consultations via the Clinical Patient Management System (CPMS) and improves its awareness and use in ERN ReCONNET
- Support the implementation of the TogethERN ReCONNET registry infrastructure
To reach these objectives, the Registries and eHealth WG together with the ReCONNET Coordination Team and the TogethERN ReCONNET Consortium:
- Monitors and supports the improvement of the CPMS and promote the ERN ReCONNET National Hubs
- Contributes to the development of the TogethERN ReCONNET registry infrastructure
In 2023, a new ERN ReCONNET Transitional Care Task Force led by Prof. Simonini (AOU Meyer IRCCS, Firenze, Italy) and Prof. Tadej Avčin (Ljubljana University Medical Centre, Slovenia) has been established.
The initial effort of the task force has been a survey mapping the transitional models currently in use targeting the HCPs; in addition, a webinar dedicated to Juvenile Onset of System Sclerosis with Dr. Ivan Földvari and Dr. Edoardo Marrani moderated by Prof. Vanessa Smith was held in March 2024, the recorded episode is now available on our YouTube channel.
The initial effort of the task force has been a survey mapping the transitional models currently in use targeting the HCPs; in addition, a webinar dedicated to Juvenile Onset of System Sclerosis with Dr. Ivan Földvari and Dr. Edoardo Marrani moderated by Prof. Vanessa Smith was held in March 2024, the recorded episode is now available on our YouTube channel.
WG Chairs
| APS | Massimo Triggiani (AOU S. Giovanni di Dio e Ruggi D’Aragona) Gabriele Simonini (AOU Meyer di Firenze) |
| EDS | Alessandro Ferraris (AO San Camillo Forlanini – Rome) Wiktoria Solecka (National Institute of Geriatrics, Rheumatology and Rehabilitation) |
| IgG4-RDs | Marco Lanzillotta (IRCCS Ospedale San Raffaele di Milano) Anna Kernder (Universitätsklinikum Düsseldorf) |
| IIMs | Ingrid Lundberg (Karolinska Universitetssjukhuset) Jiří Vencovský (Institute of Rheumatology, Prague ) |
| MCTD | Massimo Triggiani (AOU S. Giovanni di Dio e Ruggi D’Aragona) Vincent Sobanski (CHRU de Lille) |
| RP | Cristina Pamfil (County Emergency Clinical Hospital Cluj) |
| SLE | Michel Tsang-A-Sjoe (Amsterdam UMC) Jakub Závada (Institute of Rheumatology, Prague) |
| SS | Nicoletta Del Papa (ASST Centro Specialistico Ortopedico Traumatologico Gaetano Pini) Zana Brkic (Erasmus MC: University Medical Center Rotterdam) |
| SSc | Nicolas Hunzelmann (Universitätsklinikum Köln) Jeska K. de Vries-Bouwstra (Leiden University Medical Center) |
| UCTD | Massimo Triggiani (AOU S. Giovanni di Dio e Ruggi D’Aragona) Andreas Goules (General Hospital of Athens Laiko) |
| ePAGs | Charissa Frank (Bindweefsel.be) Alain Cornet (Lupus Europe) |
