Advancing Population-Based Surveillance of Birth Defects

NOFO #CDC-RFA-DD21-2101 solicits non-research, cooperative agreement applications to strengthen the capacity of existing birth defects surveillance programs to respond to emerging threats to mothers and babies as a key component of preparedness, identify and address mechanisms contributing to health disparities, and improve the health outcomes among affected populations. This will be accomplished by 1) improving birth defects surveillance capacity, including leveraging electronic health records and interoperability capabilities to enhance surveillance of birth defects, 2) improving birth defects surveillance data quality, and 3) using the surveillance data to improve health outcomes of affected populations. 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 1 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. Although CDC has been funding surveillance of birth defects since the 1990s, changes in health risks to mothers and babies and changes in health care management require that birth defects surveillance programs evolve and develop new capacities. The Zika virus outbreak demonstrated the need for more timely surveillance of birth defects and underscored the importance of strengthening state and territorial health department capacity for responding to emerging threats. In addition, the emergence of electronic heath records and the capability to electronically exchange health data between systems (i.e. interoperability) using standards, such as HL7, for the exchange of clinical and administrative data is changing the way public health interacts with the medical community to support surveillance. This NOFO consists of 3 components. Component A (8-12 awards): improve surveillance capacity, improve surveillance data quality, improve knowledge of birth defects epidemiology, improve primary and secondary prevention, and evaluate the effectiveness of activities and disseminate findings. Component A applicants may, but are not required to apply for optional Component B and/or Component C activities. Component B (1-2 awards): develop interoperability capacity between birth defects surveillance systems and electronic heath records (EHRs). Component C (4-12 awards): link critical congenital heart defects (CCHDs) screening results with surveillance data. Recipients will report individual-level birth defects data and/or CCHD data to CDC. NCBDDD performance goal: Enhance the quality and utility of birth defects surveillance systems.