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With the improved survival of newborns with rare inherited and congenital anomalies, clinical outcomes has become increasingly important. Therefore in 2020 ERNICA applied for and successfully obtained financial support of the European Union to develop a patient registry

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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. Initially, it registered four diseases seen in Dutch newborn children: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Esophageal Atresia, and Anorectal Malformation (registered exclusively by Dutch centers). In 2017, the audit was extended to include patients with Omphalocele and Gastroschisis. At the beginning of 2024 Malrotation was added, and currently datasets are being developed for Necrotizing Enterocolitis and Intestinal Atresia. This registry measures structural, process, and outcome indicators for these seven diseases. In the EPSA, data is entered anonymously and then processed by MRDM in accordance with GDPR 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 by expanding the registry to include more European hospitals.


The primary aim of the EPSA | ERNICA Registry is to improve the quality of patient care. It does this by enabling healthcare providers to gain insights into their own outcomes as well as the anonymized overall outcomes of participating centers, 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.

Inclusion criteria

All patients who have undergone intervention since the 1st of january 2014, because of Hirschsprung disease, Congenital Diaphragmatic Hernia, Esophageal Atrasia, Anorectal Malformations (registered exclusively by Dutch centers), Omphalocele and Gastroschisis. 

Apply to register: how to sign up your Medical Center: 

Do you have any questions, or do you with to participate in the EPSA | ERNICA Registy? 

Please contact the audit managers: 


Already registering? 

For more practical information, links to the registration system and the data dictoray, visit: 



To gather comparable, comprehensive and complete pre-, peri- and postnatal data to improve the quality of care. 

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