Evaluation of the Texas Birth Defects Registry: An active surveillance system

Abstract

Evaluations of surveillance systems are necessary to determine if the goals of the system are being met, how efficiently the surveillance is being implemented, and if resources are being used appropriately. An evaluation of the Texas Birth Defects Registry was conducted to assess the overall quality of data collection and to examine variations across regions of the state. The registry was evaluated by using published guidelines for evaluating public health surveillance systems; the evaluation included staff interviews, process observation, and secondary data analysis. The registry monitors >370,000 births/year through active surveillance, with considerable disparities in workload across regions of the state. Because of the geographic size and substantial population of Texas, data collection is complex. However, the estimated sensitivity of the system appears sufficient, and rates for selected defects are highly comparable with other U.S. active birth-defect surveillance systems. Registry staff continually monitor the quality of data collection and provide additional training. Amid unstable funding, the registry staff have demonstrated optimal foresight and flexibility to adapt and continue quality data collection. Timeliness needs to be improved and more consistent quality assurance is needed across regions of the state. Retaining staff and increasing visibility are essential to providing more stability. Active surveillance for birth defects is labor-intensive but provides invaluable data for its stakeholders. The Texas Birth Defects Registry has proven to be a quality surveillance system and a beneficial resource for Texas.