Educational online webinars of European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) for patients, caregivers and healthcare professionals: six years’ experience

Emanuele Gotelli¹, Rosanna Campitiello¹, Eric HACHULLA², Vanessa Smith³, João Eurico Fonseca⁴, Tadej Avcin⁵, Gabriele Simonini⁶, Silvia Aguilera⁷, Lisa Matthews⁸, Charissa Frank⁹, Wiebke Lautré¹⁰, Monica Testoni¹¹, Diana Marinello¹¹, Rosaria Talarico¹², Marta Mosca¹³ and Maurizio Cutolo¹⁴, ¹University of Genoa, Genoa, Liguria, Italy, ²CHU Lille, Département de Médecine Interne et Immunologie Clinique, Centre de Référence des Maladies Auto-Immunes et Auto-Inflammatoires Rares du Nord, Nord-Ouest, Méditerranée et Guadeloupe (CeRAINOM), Lille, France, Lille, France, ³Ghent University Hospital, Gent, Belgium, ⁴Faculdade Medicina, Universidade de Lisboa, ULS Santa Maria, Centro Académico Medicina de Lisboa, Lisboa, Lisboa, Portugal, ⁵University Children's Hospital, University Medical Center Ljubljana, Ljubljana, Slovenia, ⁶Rheumatology Unit, ERN-ReCONNET center, Meyer Children's Hospital IRCCS, Firenze, Firenze, Italy, ⁷Spanish Antiphospholipid Association, Alicante, Spain, ⁸Relapsing Polychondritis Awareness and Support, London, United Kingdom, ⁹Flemish Association for Hereditary Connective Tissue Disorders, Koersel, Belgium, ¹⁰CHU Bordeaux Pellegrin, Centre de Références Maladies Auto-Immunes Systémiques Rares, Bordeaux, France, ¹¹ERN ReCONNET, Pisa, Italy, ¹²Azienda Ospedaliero Universitaria Pisana, Pisa, Pisa, Italy, ¹³University of Pisa, Pisa, Pisa, Italy, ¹⁴University of Genova, Genova, Italy

Meeting: ACR Convergence 2025

Keywords: Education, education, medical, education, patient

Session Information

Date: Tuesday, October 28, 2025

Title: (2159–2194) Professional Education Poster

Session Type: Poster Session C

Session Time: 10:30AM-12:30PM

Background/Purpose: 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. So, the aim of the current study was to assess the interest and size of webinar viewers (wv) and views from ReCONNET patients/caregivers, HCPs, or both, for the different CTDs.

Methods: Live view data (available from October 2023) were obtained from Zoom, while YT views (available from 2019) were collected as of 2nd May 2025.

Results: From 2019 up to 2nd May 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 a total number of 158 wv (6 webinars, average 26±18 per webinar); those for HCPs got a total of 265 wv (11 webinars, average 24±9 per webinar) and finally those for both classes got a total of 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 averaged 902±816 views (total of 9,925), and those for both classes averaged 581±598 views (total of 3,486), again without statistically significant differences interclasses.Finally, when the number of live wv and YT views was counted for the webinar on rare and complex CTDs, then rare CTDs got a total of 172 wv (5 webinars, average 34±17 per webinar) together with 6,993 YT views (average 1,399±345 per webinar). The 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 1). 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 (β=1.85, p< 0.001) (Figure 2).

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

One-year average views (2024-2025) on YouTube recordings in rare (red bar) and complex low-prevalence (blue bar) connective tissue diseases from ERN ReCONNET achieving the ERN target for an increased education on rare connective tissue diseases (CTDs).

Linear regression analysis shows the increase overtime of YouTube views in rare and complex low-prevalence connective tissue diseases (CTDs) (one-year views). The initial number of views did not differ significantly between disease groups (β=84.54, p=0.487), while the rare CTDs group exhibited a significantly steeper increase of views over time compared to the complex CTDs group (β=1.85, p < 0.001). β in regression shows how much the dependent variable (YouTube views) changes when the independent variable (time) increases by one unit. Figure created with R software.

Disclosures: E. Gotelli: None; R. Campitiello: None; E. HACHULLA: None; V. Smith: Argenx, 2, Boehringer-Ingelheim, 2, 5, 6, GlaxoSmithKlein(GSK), 2, Janssen, 2, 5, 6; J. Fonseca: None; T. Avcin: Novartis, 6, Octapharma, 1, 6, Pfizer, 6, Takeda, 6; G. Simonini: None; S. Aguilera: None; L. Matthews: None; C. Frank: None; W. Lautré: None; M. Testoni: None; D. Marinello: None; R. Talarico: None; M. Mosca: AbbVie, 2, AstraZeneca, 2, 6, Biogen, 2, BMS, 2, Eli Lilly, 6, GSK, 2, 5, 6, Idorsia, 2, Milteny, 2, Novartis, 2, Otsuka, 2, 6, UCB, 2, 6; M. Cutolo: None.

To cite this abstract in AMA style:

Gotelli E, Campitiello R, HACHULLA E, Smith V, Fonseca J, Avcin T, Simonini G, Aguilera S, Matthews L, Frank C, Lautré W, Testoni M, Marinello D, Talarico R, Mosca M, Cutolo M. Educational online webinars of European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) for patients, caregivers and healthcare professionals: six years’ experience [abstract]. Arthritis Rheumatol. 2025; 77 (suppl 9). https://acrabstracts.org/abstract/educational-online-webinars-of-european-reference-network-ern-on-rare-and-complex-connective-tissue-and-musculoskeletal-diseases-reconnet-for-patients-caregivers-and-healthcare-professionals-six/. Accessed .

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