Fostering continuous quality improvement in a European rare disease network.

Background: The European Reference Network for rare Inherited Congenital Anomalies (ERNICA) is a clinical network dedicated to improving the quality of care for patients with rare and complex digestive and gastrointestinal diseases, many of whom require surgery in early life. The network brings together clinicians, researchers and patient representatives from 22 countries in Europe. By pooling expertise, ERNICA is able to facilitate improvement initiatives that may not otherwise be possible. However, describing the desired quality of care and transferring it to local practice remains a challenge, complicated by our low-prevalence patient population, multidisciplinary clinical involvement and heterogeneous European context. In an attempt to mitigate these challenges, and foster a system of continuous quality improvement, we present the "ERNICA quality cycle". Main body: The ERNICA quality cycle is comprised of five steps: (1) Describing the desired quality of care (2) Promoting guideline implementation (3) Measuring quality of care (4) Evaluating clinical practice (5) Conducting research. It offers a structured, continuous and collaborative approach to the improvement of care for patients with rare and complex digestive and gastrointestinal diseases. Evaluating the approach, through qualitative process evaluation, will be critical to capturing learning points. Conclusions: The ERNICA quality cycle holds tremendous potential for improving the quality of care for patients with rare and complex conditions, both within ERNICA and for other European Reference Networks.