Registry

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

Background information

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.

WHAT IS THE AIM?

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:

http://dica.nl/epsa/home

Because the diseases registered in EPSA are rare, there is a paucity of (level 1-) evidence on these topics. ERNICA considers scientific research culminating in evidence-based medicine, of vital importance to enhance quality of care and therefore supports initiatives to use data collected in the EPSA to that end. Scientific proposals to use the data will be reviewed thoroughly and on several levels, ensuring the data is utilised carefully, optimally and resulting in sound scientific evidence.

As the EPSA | ERNICA Registry is currently being built, entered data is not yet considered to be sufficient, accurate and complete. Consequently, at this time the data is not yet available. As soon as this changes, the application procedure to obtain access to the data will be published here.

Clinical Audit Board

Prof. dr. R.M.H. Wijnen, Erasmus MC, Rotterdam, chair

Prof. dr. L.W.E. van Heurn, Amsterdam MC, Amsterdam, chair

Dr. S. Eaton, UCL Great Ormond Children's Hospital, Londen, member

Dr. T. Wester, Karolinska institutet, Stockholm, member

Dr. R. Sfeir, Hôpital Jeanne de Flandre, Lille, member

Clinical Audit Managers EPSA | ERNICA Registry

Nadine M. Teunissen, MSc, Erasmus MC | DICA

Daniel Rossi, MSc, Erasmus MC & Karolinska Institutet | DICA

Marlinde van der Kamp, MSc, Erasmus MC | DICA

Contact

For questions about organisation, research or content of the registry, contact EPSA@dica.nl.

Mission

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