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Who we are
EUROKIDS is a prospective, web-based registry of newly diagnosed paediatric patients with Inflammatory Bowel Disease (PIBD). EUROKIDS was initiated in 2004 by the Porto IBD working group of the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN), in parallel to publication of the Porto criteria (1). As a prospective registry, only new patients are eligible, with their diagnosis of IBD being made after joining the EUROKIDS study, meaning that all data collected is as new and relevant as possible.
The original EUROKIDS
Originally, the first EUROKIDS registry ran from 2004 to 2019, and over 5000 PIBD patients were registered by 74 participating centres across 24 countries. Unlike this updated database, the original EUROKIDS operated with the traditional classifications of IBD into three subtypes: Crohn’s Disease (CD), ulcerative colitis (UC), and IBD-unclassified (IBD-U). It was for this reason that the original EUROKIDS registry was taken offline in order to update the classification system of IBD, incorporating new classification schemes.
Aims of EUROKIDS
- To audit and evaluate the diagnostic work-up of paediatric patients with IBD (2)
- To describe the phenotype of paediatric patients with IBD (3, 4, 6)
- To prospectively evaluate new diagnostic criteria as published by the Porto IBD working group (5, 7)
Additional EUROKIDS research aims from new database
- To compare the new cohort of PIBD patients with those registered on the old EUROKIDS database to see changes in phenotype overtime
- To validate the reliability of the new IBD classes
- To widen the database’s European origins to other continents in order to compare possible geographical differences in phenotypes
EUROKIDS update
In September of 2021, the new EUROKIDS registry was launched. The main change with the new updated EUROKIDS is the incorporation of clearer classifications of IBD in paediatric patients, creating 5 subtypes: small ± large bowel CD, isolated chronic CD, UC, atypical UC, and IBD-U. The classification system now used is based upon the Revised Porto Criteria [5] and the subsequent publication on PIBD classes [7]. A list of 23 diagnostic features are divided across 3 classes: 1) features are incompatible with UC, 2) features are rarely found in UC, and 3) features are uncommon in UC [8]. This scoring system of the 23 features per class is performed automatically by the registry’s in-built algorithm which automatically tallies the points per class to generate its own diagnosis. Both the 23-point criteria and ensuing algorithm can be found on this website under (REGISTRATION -> INFORMATION).
Data collection in EUROKIDS
Anonymised data per patient is collected within 3 months after the first endoscopy on diagnostic work-up, disease location as resulting from endoscopy, histology, radiology, disease behaviour, and Paris Classification. Based on the data registered per patient, the EUROKIDS system generates a diagnosis: small ± large bowel CD, isolated chronic CD, UC, atypical UC, and IBD-U. This diagnosis can either be agreed with or contested by the participant filling out the register.