AUTHOR=Spivack Olivia K. C. , Irvine Willemijn F. E. , Husby Steffen ,  ERNICA Representatives , Wester Tomas , Wijnen René M. H. , Pakarinen Mikko , Lemli Annette , Tytgat Stefaan , Gottrand Frederic , Fruithof JoAnne , Mutanen Annika , Tabbers Merit , Bremholm Ellebæk Mark , Deprest Jan , Storme Laurent , de Coppi Paolo , Power Beverley , Benachi Alexandra , Mesas Burgos Carmen , Studen Pauletić Polona , Ista Erwin , Dellenmark-Blom Michaela , Pini Prato Alessio , Widenmann Anke , van Steekelenburg Romee , van der Kamp Marlinde , Rossi Daniel , den Uijl Iris , Bakx Roel , Russo Francesca 

TITLE=Fostering continuous quality improvement in a European rare disease network

JOURNAL=Frontiers in Health Services

VOLUME=Volume 5 - 2025

YEAR=2025

URL=https://www.frontiersin.org/journals/health-services/articles/10.3389/frhs.2025.1609018

DOI=10.3389/frhs.2025.1609018

ISSN=2813-0146

ABSTRACT=BackgroundThe 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 bodyThe 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.ConclusionsThe 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.