ERN ReCONNET SjD Disease Group 2025 update
The year 2025 has been a period of significant momentum and consolidation for the Sjögren’s Disease (SjD) Group, during which projects launched progressed significantly thanks to dynamic collaboration and deep commitment. One of the central initiatives has been the European SjD’s Symptoms Survey, developed in collaboration with Sjögren Europe, which focused on finalizing the questionnaire’s key elements, including diagnostic criteria and patient ethnicity data in preparation for its launch. In parallel, the group reached major milestones by finalizing the TogethERN ReCONNET Registry data set for Level 3 and completing Sjogren’s disease educational module of the ERN ReCONNET Accredited Training Course.
The group’s educational and research achievements throughout the year include:
- Educational Webinars: A dynamic program was delivered in the first half of 2025, featuring “Tackling heterogeneity in Sjögren’s disease: the role of stratification and clustering” by Yann Nguyen (January 29), “Diagnosis and management of peripheral neurological manifestations in Sjögren’s disease” by Alessia Alunno (March 19), and “Unmet Needs in Childhood-Onset Sjögren’s Disease – Patient and Clinician Perspectives” by Edoardo Marrani (May 21).
- Scientific Publications: The group contributed to the scientific literature with the publication of results from the ERN Transversal Working Group on Pregnancy and Family Planning Survey in the Orphanet Journal of Rare Diseases.
- Ongoing Clinical Initiatives: As 2025 concludes, the group continues to advance a Systematic Literature Review on sexual health, the RarERNpath initiative, and the development of “Red Flags” for the diagnosis and management of systemic complications, including lymphoma. Work also continues summarizing webinars for dissemination and preparing for the International Sjögren Disease Symposium 2026.
Looking toward 2026, the Group plans to initiate projects focused on the rare manifestations of SjD and the definition of specific outcomes, such as quality of life, remission, and functioning. These efforts will be supported by a new series of webinars focusing on randomized controlled trials (RCTs), kidney involvement, and pregnancy.
