An evaluation of congenital malformations surveillance in New York State: An application of Centers for Disease Control and Prevention (CDC) guidelines for evaluating surveillance systems

Established in 1982, the New York State Congenital Malformations Registry (NYCMR) is one of the largest statewide, population-based birth defects registries in the nation. In this article, we evaluate the surveillance of congenital malformations in New York State using the Centers for Disease Control and Prevention (CDC) guidelines for evaluating public health surveillance systems. In addition to the evaluation of selected qualitative and quantitative system attributes, we assess the public health significance and usefulness of the surveillance system and how well it is meeting its stated objectives. The NYCMR uses passive case ascentainment, relying on reports from hospitals and physicians. A congenital malformation is defined as any structural, functional, or biochemical abnormality determined genetically or induced during gestation and not due to birthing events. In addition to being the primary source of congenital malformations surveillance data in New York State, the NYCMR also provides cases for traditional epidemiological studies to determine risk factors for specific congenital malformations. The NYCMR has been working to meet its stated objectives while striving to improve its qualitative and quantitative attributes. Registry personnel have implemented several measures designed to enhance the simplicity of the data collection and data entry processes, as well as to maintain the acceptability of the surveillance system to the reporting sources. Because it is a statewide, population-based surveillance system, by far the strongest quantitative attribute of the NYCMR is representativeness. The sensitivity of the NYCMR is difficult to evaluate. Available estimates suggest, however, that the NYCMR identifies a large proportion of children born with congenital malformations in New York State and diagnosed from birth through two years of life. Finally, the NYCMR has in recent years been able to publish and disseminate annual reports describing the distribution of specific malformations in New York State on a timely basis.