Development of the Virginia Congenital Anomalies Reporting and Education System (VaCARES): Two pilot projects

In 1986 legislation established the Virginia Congenital Anomalies Reporting and Education System (VaCARES). The system has three goals: to collect data that can be used to evaluate possible causes of congenital anomalies, to improve diagnosis and treatment, and to let parents and physicians know what resources are available to aid children born with anomalies. All children (from birth to age 2) with congenital anomalies admitted to Virginia hospitals after January 1, 1987, are being reported to VaCARES; VaCARES then contacts their families and physicians. Before the system was implemented statewide, its procedures were thoroughly tested through two pilot projects in selected hospitals. During the pilots, it was concluded that birth certificates alone are inadequate for case ascertainment. According to hospital reports, the incidence of all congenital anomalies during Pilot II was 562 out of 10 034 births (5.6%); birth certificates showed an incidence of only 83 out of 10 034 births (0.8%). During Pilot I, 3 466 (73.8%) of the diagnoses reported were perinatal conditions; the list of reportable conditions was accordingly altered, reducing perinatal conditions reported in Pilot II to 5 diagnoses (0.4%). It was estimated that there will be about 5000 to 7000 reports submitted to VaCARES each year. It was also shown that parents should be sent general rather than specific information about their child's birth defect and that quality control and close contact with reporting hospitals are essential to maintain the integrity of the registry data.