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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ERNICA is the European Reference Network for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. The network was officially launched in March 2017. ERNICA is a network of expert multi-disciplinary healthcare professionals from specialised healthcare providers across Europe (‘ERNICA members’). ERNICA has 40 member hospitals across 12 EU/EEA countries.
‘Affiliated partners’ and patient organisations/representatives also form part of the network.
ERNICA aims to pool together disease-specific expertise, knowledge and resources from across Europe to achieve health goals that may otherwise be unachievable in a single country. Such health goals include:
- Development of clinical skill
- Increased patient access to high-quality expert care
- Increased diagnosis-specific information available to healthcare professionals, patients and their families/carers
In doing so, ERNICA also seeks to reduce health inequalities across Europe by standardising practices and making high-quality care, information and resources accessible to healthcare providers, patients and their families/carers across Europe, regardless of where they are located.
This registry measures structural, process and outcome indicators and will build further on the EPSA (European Paediatric Surgical Audit), which was developed in 2014 in the Netherlands by DICA (Dutch Institute for Clinical Auditing). Currently in the EPSA six diseases are being registered (Hirschsprung disease, Esophageal Atresia, Congenital Diaphragmatic Hernia, Omphalocele and Gastroschisis). The cumulative data in the EPSA can be used to conduct scientific research to expand our knowledge of these rare diseases, for instance by identifying risk factors of (different types of) surgery or by identifying structural differences between regions or countries in Europe.