PO:26:095 | Educational online webinars of European Reference Network on rare and complex connective tissue and musculoskeletal diseases for patients, caregivers and healthcare professionals: six years' experience

Emanuele Gotelli^1|2, Rosanna Campitiello^1|3, Eric Hachulla^4|5|6, Vanessa Smith^7|8|9, Joao Eurico Fonseca^10|11, Tadej Avcin^12|13, Gabriele Simonini^14|15, Silvia Aguilera¹⁶, Lisa Matthews¹⁷, Charissa Frank¹⁸, Wiebke Lautré¹⁹, Monica Testoni²⁰, Diana Marinello²⁰, Rosaria Talarico²⁰, Marta Mosca²⁰, Maurizio Cutolo^1|2. | ¹Department of Internal Medicine and Specialties, University of Genova, Genova, Italy; ²IRCCS Ospedale Policlinico San Martino, Genova, Italy; ³Department of Experimental Medicine DIMES, University of Genova, Genova, Italy; ⁴Institute for Translational Research in Inflammation INFINITE, Université de Lille, Lille, France; ⁵INSERM, Lille, France; ⁶Centre de référence des maladies autoimmunes systemiques rares du Nord et Nord-Ouest de France CeRAINO, Lille, France; ⁷Department of Internal Medicine, University of Ghent, Ghent University Hospital, Ghent, Belgium; ⁸Department of Rheumatology, University of Ghent, Ghent University Hospital, Ghent, Belgium; ⁹Unit for Molecular Immunology and Inflammation, Flemish Institute for Biotechnology, Inflammation Research Center, Ghent, Belgium; ¹⁰Centro Hospitalar Universitário Lisboa Norte EPE, Serviço de Reumatologia e Doenças Ósseas Metabólicas Lisboa Portugal; ¹¹Universidade de Lisboa, Unidade de Investigação em Reumatologia, Instituto de Medicina Molecular João Lobo Antunes Lisboa Portugal; ¹²University Children Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia; ¹³University of Ljubljana, Department of Paediatrics, Ljubljana, Slovenia; ¹⁴University of Florence, NEUROFARBA Department, Firenze, Italy; ¹⁵Meyer Children Hospital IRCCS, Rheumatology Unit, Firenze, Italy; ¹⁶Spanish Association for Antiphospholipid Syndrome, Elche, Spain; ¹⁷Relapsing Polychondritis Awareness and Support, Worcester, United Kingdom; ¹⁸Flemish Association for Hereditary Connective Tissue Disorders, Koersel, Belgium; ¹⁹CHU Bordeaux Pellegrin, Centre de Références Maladies Auto-Immunes Systémiques Rares, Bordeaux, France; ²⁰Azienda Ospedaliero Universitaria Pisana, Pisa, Italy.

Background. The European Reference Network on Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET), founded in 2017 by the European Union (EU) Commission, aimed to improve the management of rare connective tissue diseases (CTDs) across the EU. ReCONNET includes rare (Ehlers-Danlos Syndromes, IgG4-Related Diseases, Mixed Connective Tissue Disease, Relapsing Polychondritis) and complex with low prevalence (Antiphospholipid Syndrome, Idiopathic Inflammatory Myopathies, Sjögren’s Syndrome, Systemic Lupus Erythematosus, Systemic Sclerosis, and Undifferentiated Connective Tissue Disease) CTDs. Since 2019, ReCONNET Educational Committee organized free online webinars accessible live on Zoom platform and recorded on ReCONNET YouTube (YT) page. Aim of the study was to assess the interest and size of webinar viewers (wv) and views from patients/caregivers, HCPs, or both, for the different CTDs.

Materials and Methods. Zoom live view data (available from October 2023) and YT views (available from 2019) were collected as of 2nd May 2025.

Results. From 2019 up to 2025, ERN ReCONNET organized 73 webinars, totaling 147,030 YT views. Webinars on rare CTDs (n=20) collected 70,307 YT views (average 3,515±4,271 per webinar) and webinars on complex CTDs (n=53) totalized 76,723 YT views (average of 1,447±1,838 per webinar), the former with a significantly higher number of YT views per webinar (p<0.01). By considering Zoom data available from October 2023, live webinars targeted at patients/caregivers got 158 wv (6 webinars, average 26±18 per webinar); those for HCPs got 265 wv (11 webinars, average 24±9 per webinar) and those for both classes got 132 wv (6 webinars, average 22±15 per webinar) without statistically significant differences interclasses. The YT recording of the above webinars for patients/caregivers averaged 541±507 views (total of 3,244), those for HCPs 902±816 views (total of 9,925), and those for both classes 581±598 views (total of 3,486), without statistically significant differences interclasses. When the number of live wv and YT views was counted for rare vs complex CTDs, rare CTDs got 172 wv (5 webinars, average 34±17 per webinar) together with 6,993 YT views (average 1,399±345 per webinar). Webinars on complex CTDs collected 383 live wv (18 webinars, average 21±10 per webinar) and 9,662 YT views (average 537±642 per webinar) (Figure 1a). The difference between rare and complex CTDs was statistically significant for YT views (p<0.01), but not for wv. Linear regression analysis of YT views showed that the rare CTDs group exhibited a significantly steeper increase of views over time compared to the complex CTDs group (beta=1.85, p<0.001) (Figure 1b).

Conclusions. ERN ReCONNET’s webinars achieved a considerable number of views on YT, with significantly higher interest for rare CTDs compared to complex low-prevalence CTDs. Main users of this educational experience were found to be HCPs, and further efforts are ongoing to attract more patients and caregivers.