Population-Based Surveillance of Birth Defects and Data Utilization for Public Health Action
Birth defects are a leading cause of infant mortality in the United States and contribute substantially to health care costs and life-long disabilities. They affect one in every 33 babies in the United States, account for more than 20% of all infant deaths, and contribute to $2.6 billion annually in hospital costs alone. The Birth Defects Prevention Act of 1998 directed CDC to carry out programs to collect data on birth defects and provide information to the public about the prevention of birth defects. Accurately tracking birth defects and analyzing the collected data is the first step in preventing birth defects. This FOA provides funding to improve population-based birth defects surveillance and translate the data collected for public health action to better understand the impact of birth defects on communities, drive population-based prevention strategies, improve referral to services for affected individuals and families, and link and evaluate health outcomes of children identified through newborn screening for critical congenital heart defects and other disorders. The purpose of this FOA is to enhance state population-based surveillance of major birth defects and to use the data for public health action. Surveillance activities should focus on improvements in surveillance methodologies such as expanding data sources, increasing remote access to electronic medical records, piloting innovative approaches to electronic health data, and other methods to improve data quality and timeliness. Applicants are strongly encouraged to follow the National Birth Defects Prevention Network’s Guidelines for Conducting Birth Defects Surveillance and National Standards for Data Quality. In addition to enhanced surveillance methodologies, applicants need to demonstrate data utilization through at least three of the following: 1) publications of epidemiologic studies for enhanced surveillance methodologies, impact and trends on communities, health service utilization, etc.; 2) data driven prevention strategies for populations at risk; 3) referral to services for affected individuals and families, including evaluation of the effectiveness of the referral activities; and 4) enhance surveillance of newborn screening for critical congenital heart defects and other disorders, and evaluate health outcomes of affected children. Identification and engagement with appropriate partners are key to successfully implement the surveillance and data utilization activities. While the overall prevalence of birth defects has remained stable over time, there is variation in the prevalence of specific birth defects. Timely, complete, and accurate surveillance data are needed to explore potential associations between modifiable risk factors and these observed variations. Additionally, because infants born with birth defects are living longer, expanded surveillance activities are needed to quantify the public health impact of birth defects and to inform policy decisions that can drive improved health care services and utilization. Increasing the number of birth defects surveillance systems that provide quality data will support efforts to explore epidemiologic studies of birth defects and guide the development and evaluation of primary and secondary prevention efforts. Furthermore, these activities directly address NCBDDD’s mission and strategic priorities as well as a number of other high impact public health programs, including the CDC Health Protection Goals, Healthy People 2020 objectives, and CDC’s Strategic Public Health Priorities.
Office: CENTERS FOR DISEASE CONTROL
wep2@cdc.gov
