ERN ReCONNET IIM Disease Group 2025 update
Throughout 2025, the ERN ReCONNET Idiopathic Inflammatory Myopathies (IIMs) Disease Group has achieved significant milestones in education, clinical research, and data standardization.
A cornerstone of this year’s progress was the finalization of the IIM module for ERN ReCONNET accredited courses, which featured expert contributions on heart involvement by Louise Diederichsen, interstitial lung disease (ILD) by Antonella Notarnicola, dysphagia by Bendix Labeit, and exercise by Helen Alexanderson. This commitment to training was further reinforced by the delivery of specialized webinars, including “Exercise in IIM” on September 10th by speakers I. Lundberg, L. Diederichsen, and H. Alexanderson, and “Antibodies and phenotypes” on November 12th featuring A. Selva O’Callaghan.
The Group also played a vital role in the 2nd ERN ReCONNET Scientific Congress held in April 2025, where it organized a dedicated IIM session and facilitated difficult case discussions through the CPMS 2.0 platform.
In terms of clinical projects and registries, the Group reached a fundamental achievement with the TogethERN ReCONNET registry project through the generation and validation of Level 3 variables specifically for IIMs.
Current research efforts remain focused on the Red Flags project for IIMs, where the selection of diagnostic “red flags” from systematic literature reviews and expert opinions is ongoing to prepare a manuscript for 2026. Additionally, a transversal systematic review on Pneumocystis jirovecii pneumonia prophylaxis in rare connective tissue diseases is currently in progress.
Looking ahead to 2026, the Group has submitted several ambitious initiatives for endorsement, including:
- A study to unravel the current heterogeneity of real-world practices in IIM management that are inconsistently covered by existing guidelines.
- A cross-party collaboration (IMACS, CARRA, and ERN) focusing on Reproductive Health in Juvenile and Adult Idiopathic Inflammatory Myopathies to establish evidence-based consensus recommendations.
- A new series of webinars featuring topics such as “Fatigue in Patients with Myositis – Beyond Muscle Weakness” by Fabricio Espinosa-Ortega, “Reproductive health in Inflammatory Myopathies” by Latika Gupta, and “Recent advances in the treatment of inflammatory myopathies” by Alain Meyer.
These integrated efforts in clinical practice, standardized data collection, and expert-led education continue to address disparities in care and inform the future of myositis management across Europe.
