The EPSA has been developed by Dutch Institute for Clinical Auditing in 2014 in collaboration with the Dutch Pediatric Surgical Association. First, Dutch, new-born children with the following four diseases were registered: Hirschsprung’s disease, Congenital Diaphragmatic Hernia, Esophageal Atresia and Anorectal Malformation. In 2017 the audit was extended to include patients with Omphalocele and Gastroschisis.
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Since then ERNICA has obtained financial support of the European Commission to create a registry for all European children with rare inherited diseases and congenital anomalies. This registry was built upon the EPSA, and included an increasing number of European Hospitals.
In 2019 the registry became available for all European Reference Network ERNICA member 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.