Registry
With the improved survival of newborns with rare inherited diseases and congenital anomalies, clinical outcomes had become increasingly important. Therefore in 2020 ERNICA applied for and succesfully obtained financial support of the European Union to develop a patient registry.
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. This registry measures structural, process and outcome indicators in these six diseases. 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.
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, 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:
E-mail: EPSA@dica.nl
Already registering?
For more practical information, links to the registration system and the data dictoray, visit:
Mission
To gather comparable, comprehensive and complete pre-, peri- and postnatal data to improve the quality of care.
