Introduction

The European Pediatric Surgical Audit (EPSA) was developed by the Dutch Institute for Clinical Auditing in 2014 in collaboration with the Dutch Pediatric Surgical Association, registering four diseases seen in Dutch, new-born children (Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Esophageal Atresia and Anorectal Malformation). In 2017 the audit was extended to include patients with Omphalocele and Gastroschisis. In the EPSA, data is entered anonymously and then processed by MRDM, in accordance with GDP Regulations.

Since then ERNICA has obtained financial support from the European Commission to create a comprehensive registry for all European children with rare inherited diseases and congenital anomalies. This registry will build upon the EPSA, starting with disseminating the registry to include more European hospitals.

The primary aim of the EPSA | ERNICA Registry is to improve the quality of patient care. For instance, by enabling health care providers to get insight in their outcomes, as well as the overall outcomes, using quality indicators selected by international experts in the field. Additionally, cumulative data in the EPSA can be used to conduct scientific research, for example to compare treatments or identify certain risk factors for complications.