Opzetten van een landelijk bestand van kinderen met congenitale afwijkingen uit de Landelijke Verloskunde Registratie en de Landelijke Neonatologie registratie [Registration of congenital anomalies in the national perinatal registries]

Objective. To determine if the birth prevalence data on congenital malformations in the national perinatal registries, the Landelijke Verloskunde Registratie (LVR) (National Obstetrical Registry) and the Landelijke Neonatologie Registratie (LNR) (National Neonatological Registry), can be combined into one nationwide database, and if so to determine the validity of this database. Design. Descriptive. Setting. TNO Prevention and Health, Leiden, the Netherlands. Methods. Investigation of the registered number of congenital malformations in the LVR/LNR, the amount of overlapping and the possibility of combining the LVR and LNR into one nationwide database. The validity of this database was evaluated by comparing the total number of registered children with the total number expected in the Netherlands. Furthermore the total number of children registered in the nationwide database was compared with children registered by the European registration of congenital anomalies and twins (EUROCAT) in the Northern Netherlands. Results. The LVR and LNR were mostly complementary with respect to the registration of congenital anomalies and could be combined to one nationwide database. For sixteen important diagnoses this nationwide database contained approximately 87% of the total number expected in the Netherlands. Comparing this database with the data of EUROCAT in the Northern Netherlands showed that one-third of these congenital malformations (n = 229 in 217 children) were registered in both systems, while 99 (43%) were only registered by EUROCAT and 50 (22%) only by the nationwide database. Conclusion. It was possible to create a nationwide database, which can supplement the regional EUROCAT data with nationwide data on sixteen important diagnoses of congenital malformations