Birth Defects Data and Publications
About the Data
The Birth Defects Epidemiology and Surveillance Branch (BDES) uses active surveillance. This means it does not require reporting by hospitals or medical professionals. Instead, trained program staff members regularly visit medical facilities where they have the authority to review log books, hospital discharge lists, and other records. From this review, a list of potential cases is created. Program staff then review medical charts for each potential case identified. If the infant or fetus has a birth defect covered by the registry, detailed demographic and diagnostic information is abstracted. That information is entered into the computer and submitted for processing into the registry. Quality control procedures for finding cases, abstracting information, and coding defects help ensure completeness and accuracy.
BDES has been collecting data on birth defects in Texas since 1995, beginning with a pilot area encompassing the Lower Rio Grande Valley and the Greater Houston area (approximately 35% of live births in Texas). In 1997, active surveillance expanded to include 80% of Texas births, and in 1999, data collection efforts went statewide. Analysis of surveillance data enables the Texas Department of State Health Services to draw an increasingly accurate picture of the extent and occurrence of birth defects in Texas. Data are also helpful in:
- Identifying changes in rates over time, to detect increases that may show a change in women's health, environmental conditions, and other factors.
- Identifying geographical areas with consistently high rates.
- Providing summaries and tables upon request to the public, health planners, local health departments, and others.
- Investigating reports of unusual "clusters" of birth defects. Looking at Registry data helps determine the actual extent and nature of the cluster accurately and efficiently. Each year, BDES handles more than a dozen cluster investigations.
- Identifying families of children with specific birth defects who may be invited to participate in research studies.
- Providing information to families of children identified in the Registry about services available in Texas.
Data and Publications Highlights
- Texas Health Data: Interactive Visualization of Birth Defects in Texas
- Texas Birth Defects Registry Annual Report
- Texas Birth Defects Monitor: An Annual Data and Research Update
- Published Research Using Texas Birth Defects Registry Data and Related Projects
- A Survey: Connecting Children with Critical Congenital Heart Defects to Social Services and Identifying Barriers to Accessing Healthcare
- Glossary of Birth Defects and Related Terms
- Tips for using Texas Birth Defects Registry Data
- Texas PRAMS: Pregnancy Risk Monitoring System
- Data access policy to request data from the Birth Defects Epidemiology and Surveillance Branch.
- Important information about BDES Registry coverage and changes.