Key points
- Accurately tracking birth defects and analyzing the data is an important step in understanding birth defects.
- Tracking systems are used to collect data, such as where and how often defects occur.
- The data collected can also inform prevention and referral activities.
Importance of tracking systems
Information from birth defects tracking systems can be used by public health officials, policymakers, and scientists. These systems can be used to:
- Collect data on the number of birth defects occurring over time.
- Collect initial data on possible risk factors for birth defects.
- Inform birth defects education and prevention activities.
- Refer babies and families impacted by birth defects to needed services.
- Help policymakers allocate resources and services.
CDC supports birth defects tracking efforts and data modernization to improve birth defects tracking across the country.
State-based tracking systems
CDC provides funding and technical assistance to birth defects tracking systems in 10 states in the United States. CDC collaborates with these states to improve surveillance methods to collect the highest quality data. Lessons learned are shared with all US birth defects programs.
Identifying birth defects at a state level strengthens public health officials' ability to estimate how common these conditions are locally. State-level data can help to evaluate risk factors that are important in specific communities. These programs also support families impacted by connecting them to local services.
State-based birth defects tracking programs provide important insights into our nationwide efforts to prevent birth defects.
National Birth Defects Prevention Network (NBDPN)
CDC supports and collaborates with the NBDPN, an organization that addresses issues of birth defects surveillance, research, and prevention. NBDPN maintains a national network of birth defects programs. CDC and NBDPN partner to produce critical information about how common birth defects are in the U.S. and to provide training and education to birth defects program staff through a biennial conference. NBDPN serves as a forum for exchanging ideas and for providing technical support for state and local programs.
The Metropolitan Atlanta Congenital Defects Program (MACDP)
MACDP is a population-based tracking system for birth defects among children born to residents of certain counties of metropolitan Atlanta. MACDP has been managed by CDC since the system was established in 1967. "Population-based" means that the researchers collect data on all babies who live in the study region. Information from MACDP is used to:
- Understand who is affected by birth defects
- Learn about health outcomes due to birth defects
- Support education and health policy efforts for birth defects prevention
To be included in the MACDP tracking system, the following criteria must be met:
- The mother must live in one of the designated counties at the time of delivery.
- The infant or fetus must have a birth defect on the MACDP 6-Digit Code Defect List.
- Liveborn or stillborn infants with defects must have a gestational age of at least 20 weeks; electively terminated pregnancies with defects can be of any gestational age.
- For any liveborn infant, a birth defect must be identified by the child's sixth birthday.
MACDP tracks birth defects among approximately 35,000 births from 3 metro Atlanta counties (DeKalb, Fulton, and Gwinnett) each year.
International Clearinghouse for Birth Defects
The International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) brings together birth defects programs from around the world. ICBDSR aims to conduct worldwide birth defects tracking and research. CDC collaborates with the ICBDSR to share expertise on global birth defects work.
Tracking methods
Tracking systems may use different methods to find pregnancies impacted by birth defects and confirm the diagnoses. Generally, healthcare providers or healthcare systems inform programs about babies born with birth defects. Program staff members might review medical records of the mother and the baby to ensure information about each baby is accurate. The method that a program uses depends on legislation in the state, funding, staff capacity, community input, and partners' engagement.
Data Modernization
It is important that birth defects tracking programs have timely access to information. Data modernization and use of electronic health records helps ensure that tracking systems are aware of emerging issues and can provide timely support to families. CDC is working with partners to promote data modernization strategies that help achieve these goals.
Resources
MACDP 6-Digit Code Defect List
This list includes birth defects that are tracked by MACDP, as well as conditions that are never included and those that are included only under certain circumstances. The code is based on the International Classification of Diseases, 9th Revision, Clinical Modification and the British Pediatric Association (BPA) Classification of Diseases.