ERN ReCONNET MCTD Disease Group 2025 update
The year 2025 has been a period of significant progress for the Mixed Connective Tissue Disease (MCTD) Disease Group, marked by the completion of major educational and research milestones.
A primary achievement this year was the finalization of the MCTD e-learning course, which features comprehensive modules covering patient experiences by Vera Guimarães and Magdalena Ciupera, and evolving views on the nature of MCTD by Silvia Bellando Randone. The course also explores the physiopathology of the disease led by Ewa Kuca-Warnawin, epidemiology by Marzena Olesińska, and clinical aspects with “red flags” by Paola Triggianese. Additional modules detail diagnostic procedures by Carmen Pizzorni, prognosis by Cristina Pamfil, and routine clinical monitoring by Marzena Olesińska, as well as treatment targets and the “Difficult-to-Treat” (D2T) approach presented by Benjamin Chaigne and Kevin Chevalier.
Alongside these educational efforts, the group successfully finalized the MCTD TogethERN ReCONNET Registry data set for Level 3 and established the setup for a survey regarding clinical practice in MCTD. Educational outreach was further strengthened by two key webinars delivered by Magdalena Ciupera and Vera Guimarães: “Doctor, can you ask me…?” held on April 2, 2025, and a session on unconventional therapies in Connective Tissue Diseases delivered on October 15, 2025.
The members of the group have been highly prolific in research, contributing to several high-impact publications:
- Research in RMD Open unraveled the MCTD spectrum in relation to IPAF, VEDOSS, and other CTD classifications.
- A multicenter retrospective study regarding the treatment of MCTD was published in the Journal of Autoimmunity.
- A paper on the Patient Partnership model in rare and complex rheumatological conditions was accepted by The Lancet Rheumatology, developed by the Patient Partnership WG.
- A transversal survey published in Reproductive Health addressed unmet needs in pregnancy and family planning for people living with rare diseases, developed by the ERN Transversal WG on Pregnancy and Family Planning.
- An expert consensus on the therapeutic management of rare systemic lupus erythematosus manifestations was published in The Lancet Rheumatology, developed by the SLE Disease Group.
Ongoing efforts as the year concludes include the “Red Flags in MCTD” project and a wide-reaching survey on clinical practice led by Kevin Chevalier and Benjamin Chaigne. This survey, which has already gathered over 100 responses, aims to map how physicians across the network manage MCTD symptoms and complications in the absence of formal clinical guidelines, with results expected in the second half of 2026.
Looking ahead to 2026, the group plans to continue the “Red Flags” initiative and launch a survey on MCTD classification led by Jeska de Vries-Bouwstra.
Additional planned activities include a Special Issue on MCTD in Frontiers in Immunology edited by Paola Triggianese and a secondary survey focused specifically on treatment practices.
The educational program will also expand with a new webinar titled “How I handle my Raynaud,” featuring Magdalena Ciupera, which will explore personal patient experiences with digital ulcers, warming gadgets, and the role of specialized nursing care.
These collective initiatives remain dedicated to standardizing care and improving the clinical management of MCTD across Europe.
