Mapping the landscape of congenital anomaly registries worldwide: what role do health and economic factors play?

BACKGROUND: Congenital anomalies (CAs) are structural or functional changes occurring during intrauterine life. The World Health Organization data indicate that about 295,000 babies die within the first four weeks of birth due to CAs every year. It has been estimated that approximately 94% of severe CAs occur in low- and middle-income and low-income countries. While the use of a national congenital anomaly registry (CAR) can help improve healthcare quality, access, and planning for families and children born with CAs, few countries report using such a system. We aimed to evaluate the correlation of health and economic indicators with the existence of national CARs. METHODS: We compiled data on individual countries' reported CAR status from regional networks, the International Clearinghouse for Birth Defects Surveillance and Research, the Modell database, and a literature search. We classified countries according to the reported CAR status into those that reported having a national CAR with or without regional CAR, only a regional CAR, and no CAR data available. Using the Kruskal-Wallis test, we analysed whether a country's CAR status was correlated with health and economic data from UNICEF and the World Bank. RESULTS: Of the 202 countries in our sample, 30 reported having a national CAR, 19 only a regional CAR, and 153 no CAR. Country income group-level analysis showed that 35.4% of high-income, 13.2% of upper middle-income, and 0% of low- and middle-income, and 0% low-income countries were reported to have national CARs. Countries lacking a national CAR tended to have a lower gross domestic product (P < 0.001), increased infant mortality rates (P < 0.001), and lower birth registration rates (P < 0.001). CONCLUSIONS: While the importance of CARs for improving global health is widely recognised, most LMICs and LICs still do not report having a national CAR. Our study suggests that countries without CARs face greater economic and health systems challenges. Collaborations to develop national CARs need to consider the impact of these wider economic and health systems challenges.