Second, along with this trend toward the increasing availability of data, there has been a simultaneous trend toward declining federal funding to support biomedical research.1–4,11 This has led to further interest in improving our understanding of how to leverage available data sources to power research more efficiently For example, the use of existing registries or the electronic health record as platforms to support clinical trials has been proposed with the goal of reducing the time and costs associated with data collection.1–4,12 Finally, the current emphasis in the United States on both improving the quality of health care and lowering costs has necessitated the analysis and integration of both quality and resource utilization data across numerous sources in order to elucidate the landscape of care delivery and outcomes, to investigate relationships between quality and cost, and to develop and investigate strategies for improvement.1–4,13 These and other recent trends have led to a greater recognition in the health care field of the value of leveraging the increasing volume of available data, and numerous recent initiatives have been launched with the goal of further integrating information across sources to conduct novel research and improve care These sources include the National Institutes of Health Big Data to Knowledge and Precision Medicine Initiatives, among others.1–4,14,15 Pediatric Cardiovascular Data In 2015, the National Heart, Lung, and Blood Institute of the US National Institutes of Health convened a working group to characterize the current data environment in the field and to offer recommendations for further development and integration.1 The working group described several strengths and weaknesses related to the existing data environment as detailed in the following sections.1 Data Sources Numerous clinical and quality improvement registries, administrative/billing databases, public health databases, research datasets, and other sources now exist in the field and contain detailed information that is used for pediatric cardiovascular research, surveillance, and quality improvement purposes.1–4,16 Comprehensive listings of available data sources, both in the United States and worldwide (Table 24.1), have recently been published.1–4,16–18 In addition, data are being increasingly captured via a variety of newer techniques and modalities, including the electronic health record, medical monitors and devices, and genetic and biomarker data.1–4 Some centers are also now capturing standardized longerterm outcomes data, such as quality-of-life and neurodevelopmental outcomes data.1–4,19–21 Table 24.1 Summary of Existing Pediatric Cardiovascular Databases and Registries ... and biomarker data.1–4 Some centers are also now capturing standardized longerterm outcomes data, such as quality-of-life and neurodevelopmental outcomes data.1–4,19–21 Table 24.1 Summary of Existing Pediatric Cardiovascular Databases and Registries