Until the recent years, there were no data available about the prevalence, etiology, and preventive strategies of congenital anomalies in the Northwest of Iran. Beginning from 2000, we carried out a research project on the epidemiology of congenital anomalies aiming to document the epidemiologic features of congenital anomalies in the North-West of Iran as the baseline information to set up a regional population-based registry of birth defects. Our programme was also presented and accepted in the 2006 annual meeting of International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) in Sweden, as a member of countries having an established registry for birth defects. The registry is also a "World Affiliate" member of the European network of registries for the epidemiologic surveillance of congenital anomalies (EUROCAT). The programme is now called Tabriz Registry of Congenital Anomalies (TRoCA).
The principal aims of TRoCA programme are to establish a monitoring system of congenital anomalies in the Northwest of Iran, and to implement control and preventive tasks in the region. These control and prevention programmes include:
1) The use of genetic knowledge for prevention (i.e. the nature of genetic diseases, modes of inheritance, their prevention, and the current available approaches for management of a congenital anomaly and genetic disorder);
2) Improving the genetic counselling and tests in the community: many genetic tests are currently available in the area for those who need. However, there is a gap between the diagnosis and management of congenital anomalies and genetic diseases. For instance, according to the current policies in the country, termination of the pregnancy is only permitted for life threatening anomalies whereas many young couples require termination of pregnancy if they are diagnosed with an even minor anomaly. The framework of counselling should also be improved to consider the social values and beliefs in the population;
3) The TRoCA programme examine the rates and patterns of various types of congenital anomalies and look for possible local causes and influencing factors in infants diagnosed in maternity hospitals, children hospitals or genetic clinics.
Application of our monitoring and surveillance programme may provide a pilot model and insights into the epidemiology and potential for prevention and control of congenital anomalies in the whole region and in the country then.