Birth Defects Registry

The Department of Health and Senior Services (DHSS) maintains a birth defects registry for Missouri resident live births based on linkage of defects reported on birth certificates, death certificates, hospital patient abstracts, enrollment data for state programs to assist affected families, such as the Hope program (formerly Children with Special Health Care Needs); and screening data such as the newborn hearing screening data set. Cases include defects diagnosed and reported through the first year of life.

The registry includes data for all births in the state, but is not complete for some counties in which a substantial proportion of residents use out-of-state hospitals. While birth and death certificates are available for Missouri residents using out-of-state hospitals, DHSS has limited access to patient abstract data from these hospitals.

Births since 1980 are included in the data set. Because of changes in access to data sets, and changes in data items included in each component data source, there are inconsistencies over time. For most investigations, DHSS prefers to limit studies to births since 1993.

The data for a calendar year of births are generally available 20 months after the close of the year. The delay is necessary because cases are ascertained through the first year of life.

Birth defect registry data are used to monitor the health status of Missourians, particularly in areas potentially affected by environmental contamination. The data are also used to assist public health and educational officials in the development and conduct of programs to assist affected families, and to assist families in gaining access to state services.