A new registry of congenital anomalies in Iran

Registration of the occurrence of birth defects is now being performed in about 50 countries in the world as the baseline system for control and prevention of congenital anomalies. The principal aim of this program was to introduce and establish a monitoring system of congenital anomalies in the Northwest of Iran as a basis for planning and assessing prevention and control interventions.

Some of the registry systems of the European network countries, the United States of America, and the United Arab Emirates were studied in terms of data collection, process, analysis, use, and evaluation of the system to find the minimum requirements for setting up a local registry in Iran. Key end users of the local Iranian system met and determined the minimum requirements for operation of the registry.

End users identified the minimum data required to establish a local hospital-based registry as: child/mother identification number, child/mother hospital record number, type of anomaly, gender, date of diagnosis, mother's age at delivery, family history of anomaly (optional field), familial marriage (optional field), date of death (if any). Initial results show a birth prevalence rate of 1.7% for all reportable defects combined.

This program will provide some essential data as an epidemiological tool for local investigations, information for health service planners, for clinicians, and for genetic counseling. The program may also help to identify regional interventions that could help to prevent and control congenital anomalies in the study population. Some of these interventions may be specific to the study population while others may have more general applications in similar areas and communities.