CHD Database

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CHD Database



CHD Databases for Surveillance, Research and Innovation

​The mission of the CHPHC is to prevent congenital heart defects and improve outcomes for affected children and adults. The Consortium achieves its mission by: providing leadership and a unified voice for public health priorities; expanding opportunitie​​s for surveillance and public health research; and informing public health policy priorities that benefit public health and affected persons. One strategy the consortium has implemented to raise awareness of research and surveillance opportunities is by leveraging multiple data sources. 

CHD Database Landscape

​There is a wealth of data already being collected by a number of different databases and registries encompassing many aspects of ​overall cardiac care, including, but not limited to, the various clinical, surgical, critical care, anesthesia, and administrative databases. The CHPHC has groped the databases based on operational (data source type) categories so as to educate researchers, funding decision makers, clinicians and the public as to the broad categories. The purpose is to present a framework that is more easily mutually exclusive than the traditional functional/utility categories. 

  • Table 1 Summary of select database/dataset ​(PDF; last updated September 2012)
  • Table 2 CHD Database/dataset utility (PDF; last updated September 2012)
  • Table 3 CHD Database/dataset utility categories defined​(last updated September 2012) 
    ​Data Use​Definition
    ​CHD Surveillance​​Ability to systematically monitor prevalence data on CHD

    ​CHD Risk Factor Studies​ ​ ​ ​Ability to evaluate potential risk factors for the development of CHD
    ​Health Services Research​Ability to evaluate health care utilization in people with CHD. 

    ​Outcomes Research​Ability to evaluate outcomes of people with CHD over a specified time period. 
    ​​Bench​marking​Ability to make comparisons of outcomes relative to peers including risk adjustment for baseline characteristics.
    ​Comparative Effectiveness Research​​Ability to determine which therapeutic strategies will result in improved outcomes. 

Se​​lect 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

Linka​ge of Databases

​The 2013 paper Public Health Science Agenda for CHD​: Report from the Centers for Disease Control and Prevention Experts Meeting (Oster et. al. J Am Heart Assoc., 2013) identifies several strategies to address gaps in public health knowledge as related t​o 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. 

Education and​ Resources

​Databases for Congenital Heart Defect, Public Health Science, Overview and Applications

This Webin​ar provided an overview of the Congenital Heart Public Health Consortium (CHPCH) focus area on databases. Drs Tiffany Colarusso and Kathy Jenkins presented the key aspects of databases for public health, detailed the different categories of databases, and discussed gaps and opportunities for using databases to improve public health science.

View Recorded Webinar (May 2014)


Additional Information and Resources

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