National registries of congenital anomalies in the world: historical and operational aspects

Abstract

Objective: To identify registries of congenital anomalies with national coverage existing around the world, highlighting its main historical and operational characteristics. Methods: Document review of literature on the Medline/Pubmed database and data from reports, official documents and websites. Works relating at least one national register were included. Results: 40 national registries of congenital anomalies were identified in 39 different countries. All registries included in the study were located in high- or uppermiddle-income countries, with a concentration in Europe. Most of the registries were population-based, with mandatory notification and time limit of notification of up to one year of age. The Brazilian registry presented the highest annual coverage. Conclusion: The registries discussed here presented different characteristics, which were related to the reality of each country. The presented results provide subsidies for surveillance of congenital anomalies, especially in places that wish to implement such an activity.