Congenital Heart Defect (CHD) Databases for Surveillance, Research and Innovation

CHD Database Landscape

Databases for Congenital Heart Defect Public Health Studies Across the Lifespan (Riehle-Colarusso T, et. al. JAHA 2016) describes the wealth of data already being collected by a number of different databases and registries encompassing many aspects of overall cardiac care. CHD data are managed by hospitals, specialty organizations, partnerships and public health and other governmental entities. Researchers may be familiar with some databases but not others. Anyone planning studies to address public health knowledge gaps may benefit from an understanding of this complex constellation of databases.

Data Use and Definition

Select Databases and Registries for Studying Outcomes for Persons with Congenital Heart Defects in the United States 

• Birth Defects Surveillance Programs (multiple) 
• Centers for Medicare and Medicaid Services (CMMS) 
• Congenital Cardiac Catheterization Project on Outcomes (C3PO) 
• Congenital Cardiovascular Interventional Study Consortium (CCISC) 
• Congenital Database of the Society of Thoracic Surgeons (STS) 
• Congenital Evaluation, Reporting, and Tracking Endeavor (CONGENERATE) (Canada and US) 
• Congenital Heart Surgeons’ Society (CHSS) Research Databases 
• Early Intervention Databases (multiple) 
• Health Care Utilization Project (HCUP)—Kids’ Inpatient Database (KID) 
• Health Care Utilization Project (HCUP)—Nationwide Inpatient Sample (NIS) 
• Health Care Utilization Project (HCUP)—State Inpatient Databases (SID) 
• HMO Research Network (HMORN) 
• Improving Pediatric and Adult Congenital Treatment (IMPACT) of the National Cardiovascular Data Registry of the American College of Cardiology Foundation (ACCF) and the Society for Cardiovascular Angiography and Interventions (SCAI) 
• Joint Congenital Cardiac Anesthesia Society—Society of Thoracic Surgeons Database 
• Joint Council on Congenital Heart Disease (JCCHD) National Quality Improvement Initiative 
• MarketScan® Research Databases 
• Mid-Atlantic Group of Interventional Cardiology (MAGIC) Catheterization Outcomes Project 
• National Association of Children’s Hospitals and Related Institutions (NACHRI) Case Mix Comparative Data Program (CMCDP) 
• National Birth Defects Prevention Network (NBDPN) 
• National Birth Defects Prevention Study (NBDPS) 
• National Hospital Care Survey (NHCS) 
• National Hospital Discharge Survey (NHDS) 
• National Survey on Children with Special Healthcare Needs (NS-CSHCN) 
• Pediatric Cardiac Care Consortium (PCCC) 
• Pediatric Cardiac Genomics Consortium (PCGC) 
• Pediatric Heart Network (PHN) 
• Pediatric Hospital Information System (PHIS) 
• Pediatric Hospital Information System—Society of Thoracic Surgeons (PHIS-_STS) Linked Dataset 
• Slone Epidemiology Center’s Pregnancy Health Interview Study/Birth Defects Study, Boston University 
• Special Education and other educational Databases (multiple) 
• State All-Payor Claims Databases (multiple) 
• State Hospital Discharge Databases (multiple) 
• Virtual Pediatric Intensive Care Unit Performance System (VPS) 
• Vital Records 

Linkage of Databases 

The article Public Health Science Agenda for CHD: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster M, et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related to CHD. In the United States, medical data is not available on a widespread national level. This makes obtaining information to answer questions on specific populations (eg, those with CHD) challenging. A clear outcome of efforts to link databases is the ability to leverage the above mentioned wealth of data that is already being collected. Rather than creating new databases, this strategy aims to foster collaborative opportunities for learning. Furthermore, while there are no population-based databases that are individually tracking long-term outcomes, merging information across databases over time may be able to provide valuable long-term outcomes data. Although this strategy has challenging obstacles, they are not necessarily insurmountable and the potential positive impact is great. In addition to learning about patient-level outcomes for persons with CHDs, successful linkage of these databases may help identify benchmarks for care and inform screening and prevention efforts.  

Additional Information and Resources 

• Children's Heart Foundation 
• CDC: National Center on Birth Defects and Developmental Disabilities 
• NIH: National Heart Lung and Blood Institute 

The contents of this page were developed by the Congenital Health Public Health Consortium (CHPHC). The CHPHC is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The outputs of the CHPHC are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.