The next step in monitoring – the Romanian National Congenital Anomaly Registry (RN-CAR)

Congenital anomalies or congenital malformations involve the presence of malformations with which an individual is born, according to the definition of the World Health Or­ga­ni­za­tion. Many of these anomalies have a genetic com­po­nent, and some can be caused by prenatal exposure to te­ra­to­ge­nic factors, while others may have a multifactorial or unknown etiology. Overall, these malformations result in struc­tu­ral changes, functional abnormalities ranging from mild to severe, and can affect the long-term development of the fetus and newborn. Worldwide, any type of congenital mal­for­ma­tion has a significant impact on the quality of life of the individuals, as well as on their family. The Romanian So­cie­ty of Obstetrics and Gynecology had a significant role in elaborating dedicated protocols and in introducing uni­ver­sal prenatal testing over the last 20 years. These ac­tions in­creased the diagnosis of fetal malformations. Pre­ven­ting the exposure to known teratogen, improving scre­ening me­thods and improving environmental and ma­ter­nal con­di­tions had a significant role in managing the preg­nan­cies. The increased experience among time, the ad­van­ces in prenatal diagnosis, and the dedicated me­di­cal per­so­n­nel in overspecialized fields led to early diag­no­sis and dif­fe­rent options in the cases with a diagnosis of con­ge­ni­tal mal­for­ma­tion during pregnancy. The role of a con­ge­ni­tal malformations registry is to realize a systematic and com­pre­hen­sive database that collects, stores and analyzes in­for­ma­tion about congenital malformations detected at birth or during pregnancy. The importance of such a re­gis­try can be seen in other countries that had developed this type of registry for many years. The benefits include es­sen­tial as­pects for public health, medical research and pa­tient care. The registry can enable the identification of trends and patterns in the appearance of congenital mal­for­ma­tions. Identifying risk factors and potential causes in some po­pu­la­tions can help to implement preventive mea­sures. A well-established registry can contribute to plan­ning ne­ces­sary medical and social resources for the care of children with congenital malformations. As we con­si­der that the Ro­ma­nian National Congenital Anomaly Re­gis­try (RN-CAR) is the next step in the fetal malformation diag­no­sis and sub­se­quent management, we present in this paper the be­ne­fits of a national database for both patients and doc­tors.