The New England Regional Infant Cardiac Program

This was the first large multicenter population-based cardiac registry which ascertained infants in whom the diagnosis was confirmed by cardiologic studies including findings at cardiac catheterization, surgery and/or autopsy. This was a descriptive clinical study of cases without a study of controls which provided information on the frequency of specific diagnoses, on associated non-cardiac defects, survival and certain family characteristics (Fyler, 1980).

Fyler, DC Report of the 1980 New England Regional Infant Cardiac Program. Pediatrics 1980: 65(suppl):375-461.

Regional Registries of Birth Defects

Nationally and internationally population-based data collections were set up in response to concerns with environmental causes of birth defects. These data collections focused initially on visible malformations, such as oral clefts and neural tube defects, but eventually included also other major outcomes such as cardiovascular and renal disorders.

Special attention to the epidemiology of cardiovascular diseases was given in the following programs:

• Metropolitan Atlanta Congenital Defects Program (MACDP)
• California Birth Defects Monitoring Program
• EUROCAT: European Surveillance of Congenital Anomalies
  (formerly European Concerted Action on Congenital Anomalies and Twins)
• National Birth Defects Prevention Network
• National Center for Birth Defects and Developmental Disabilities