Use case 3: Coding in kidney biopsy registries, example: Flemish Registry

Since 2017, all native kidney biopsies performed in the Flemish region of Belgium are registered (with informed consent of the patients) in the FCGG-NBVN registry (Flemish Collaborative Glomerulonephritis Group of ‘Nederlandstalige Belgische Vereniging voor Nefrologie’).³ The registry has been set up for epidemiologic and scientific purposes; it includes clinical parameters and kidney biopsy diagnosis registered via two different coding systems (ERA PRD for clinical diagnosis coded by the nephrologist and a proprietary system for pathological diagnosis coded by the pathologist). Although this coding approach has worked well until now, it is heavily dependent on the proprietary pathology coding list. Therefore, the FCGG-NBVN registry is looking forward to the KBC system to align its coding approach with a more standard and international medical coding system and especially with SNOMED CT, and will use KBC codes once established. It should be acknowledged that Belgium has chosen to adopt SNOMED CT as background terminology in its digital health infrastructure (contact persons Amélie Dendooven and David Op De Beeck).

A letter of support from the Flemish Collaborative Glomerulonephritis Group is available, in addition to letters of support from similar registries namely the Scottish Renal Registry and the Uruguayan Renal Registry.