Birth Defects Monitoring Program

Overview

The North Carolina Birth Defects Monitoring Program provides complete, timely and accurate data on birth defects in North Carolina, and collaborates with other organizations to produce high-quality research to inform local, state and national birth defect prevention efforts. We hope you find the information in these pages useful. Please keep in mind that we cannot provide personal medical advice about diagnoses or treatments. If you need such medical information, please contact your health care provider or local health department.

The North Carolina Birth Defects Monitoring Program (NCBDMP) is part of the State Center for Health Statistics in the North Carolina Division of Public Health and was formally established by the State General Assembly in 1995. However, the NCBDMP has been collecting information about birth defects since 1987. We are a team of public health professionals dedicated to providing information about birth defects in our state and working toward reducing the occurrence of birth defects everywhere.

Services

The NCBDMP gathers information on infants who are born with serious birth defects (also called congenital anomalies) that are diagnosed within the first year of life. We also collect information about affected pregnancies from stillbirths and elective terminations. Collecting information from both live births and fetal deaths is important to understanding how often birth defects truly occur in pregnancy.

The NCBDMP is an active, population-based surveillance system. This means that we actively collect information about all medically diagnosed cases of birth defects across the entire state. Data are collected by a team of trained field staff who systematically review and abstract (summarize) medical records. These data are combined with other information from administrative health databases such as hospital discharge records, birth certificates and newborn screening records. This intensive method provides the most complete, timely and accurate data on the incidence of birth defects.

The NCBDMP performs several other services such as:

• Maintaining a central registry with information about birth defect cases in North Carolina.  As required by state law, all personal identifying information in the registry is confidential.
• Responding to inquiries from health departments, health care professionals, legislators and the public about the occurrence of birth defects in our communities.
• Conducting epidemiologic studies of birth defects in North Carolina.  We often work with other state agencies, advocacy groups, local universities and other research organizations with the common goal of identifying new ways to prevent birth defects.
• Improving the delivery of services to children with special needs through identification and referral to appropriate services.

The NCBDMP submits case numbers annually to the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention. To see the latest state-specific data tables and directory information for birth defects programs, check out the most recent annual report from the National Birth Defects Prevention Network: Major Birth Defects Data from Population-based Birth Defects Surveillance Programs in the United States, 2012-2016.

Authority

The Birth Defects Monitoring Program is established by North Carolina General Statute Chapter 130A - Article 5. Its administrative rules are codified as North Carolina Administrative Code Title 10A - Chapter 47 SubChapter C. All personal identifying information collected by the program is considered confidential under state law.