Process of and problems in changing a birth defects registry reporting system

Background: The New York State (NYS) Department of Health (DOH) Congenital Malformations Registry (CMR), which began operations in 1982, was developed after the Love Canal crisis. New York hospitals are mandated to report children under age 2 years in whom a congenital anomaly is diagnosed. The CMR has tried to maintain a quality birth defects registry by using identifiers; narrative for defects; and completeness and accuracy, balanced with timeliness. In recent years, the existence of the registry has been questioned, and the NYS DOH evaluated the CMR to streamline it and to reduce the reporting burden on the hospitals. Methods: Because NYS hospitals were already required to submit hospital discharge data through the Statewide Planning and Research Cooperative System (SPARCS), the CMR used this system as an alternative method for reporting. Results: The evaluation indicated that the CMR, SPARCS, and hospital systems needed to be modified. Modifications needed to maintain registry quality were the most difficult. CMR staff worked closely with hospital personnel on all modifications so they would understand the reasons for the modifications. The changes were more global than originally anticipated, involving large national software vendors. Conclusions: The transition is ongoing. Additional work will be needed to verify data quality. Some of the modification will affect national software vendors and may be useful for other birth defects registries.