Fostering continuous quality improvement in a European rare disease network: Where are we now?

Abstract Background The European Reference Network for rare Inherited and Congenital Anomalies (ERNICA) aims to improve care for patients with rare and complex digestive and gastrointestinal diseases across Europe through cross-border collaboration. In a previous publication, we introduced the ERNICA quality cycle as a structured framework for the continuous improvement of care. This framework focuses on five steps: Describing the desired quality of care, promoting implementation, measuring care quality, evaluating clinical practice and performing research. Main body Focusing on three selected ERNICA conditions (omphalocele, rectosigmoid Hirschsprung’s disease and esophageal atresia), this paper reports on progress made across all steps of the ERNICA quality cycle. Activities include the development of clinical guidelines and core quality indicator sets and efforts to standardise clinical definitions. To support successful guideline implementation, both a central implementation support team and a network of local implementation leads have been established. Quality measurement is facilitated through the European Pediatric Surgical Audit (EPSA), which enables real-world data collection, benchmarking and the evaluation of clinical practice. Steps have been taken to identify and fill knowledge gaps through high-quality research. Efforts include the development of core outcome sets, exploring the use of EPSA data for research purposes, and sharing lessons learnt from ERNICA-endorsed randomised controlled trials. Conclusion The progress presented in this paper reflects ERNICA’s growing impact and sustained dedication to improving care and outcomes for patients with rare digestive and gastrointestinal diseases across Europe. This update aims to keep stakeholders informed, promote transparency, and facilitate continuous learning and collaboration. Building on lessons learnt, future efforts will involve optimising ongoing initiatives and scaling the ERNICA quality cycle to include additional diseases. Although these efforts are not without challenge, ERNICA remains committed to improving care quality across its connected centres and beyond.