Table 1.

Administrative Healthcare Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health Investigations

Name	Brief Description	Sponsoring Organization	Data Years	URL (Accessed as of June 1, 2016)
Administrative—Heathcare Cost and Utilization Project (HCUP) Databases
Kids’ Inpatient Database (KID)	Weighted sample of the SID data (see below) used to identify, track, & analyze national trends in pediatric inpatient healthcare; sampling weights help provide national estimates	Agency for Healthcare Research and Quality (AHRQ)	Every 3 years; 1997–present	http://www.hcup-us.ahrq.gov/kidoverview.jsp
Nationwide Emergency Department Sample (NEDS)	Sampled from the SID and SEDD data (see below), is the largest all‐payer emergency department (ED) database in the US used to create estimates of ED care	Agency for Healthcare Research and Quality (AHRQ)	2006–2013	http://www.hcup-us.ahrq.gov/nedsoverview.jsp
Nationwide/National Inpatient Sample (NIS)	Weighted sample of discharges from US community hospitals, which is the largest publicly available all‐payer inpatient healthcare database in the US; sampling weights help provide national estimates	Agency for Healthcare Research and Quality (AHRQ)	1988–present	http://www.hcup-us.ahrq.gov/nisoverview.jsp
Nationwide Readmission Database (NRD)	Sampled from the SID data (see below), used to create estimates of national readmission rates for all payers and the uninsured	Agency for Healthcare Research and Quality (AHRQ)	2013	http://www.hcup-us.ahrq.gov/nrdoverview.jsp
State Ambulatory Surgical and Service Databases (SASD)	Encounter data for ambulatory surgery & other outpatient services from hospital‐owned facilities; capture of hospital‐based outpatient diagnostic and/or pediatric cardiac catheterization is variable, as are data content & years; some states have nonhospital outpatient data	Agency for Healthcare Research and Quality (AHRQ)	1997–present	http://www.hcup-us.ahrq.gov/sasdoverview.jsp
State Emergency Department Databases (SEDD)	Discharge data on all ED visits in a given state that do not result in an admission; ED visits resulting in admissions are captured in the SID	Agency for Healthcare Research and Quality (AHRQ)	1999–present	http://www.hcup-us.ahrq.gov/seddoverview.jsp
State Inpatient Databases (SID)	Inpatient discharge data from participating states used to identify, track, & analyze state trends in healthcare utilization, access, charges, quality, and outcomes	Agency for Healthcare Research and Quality (AHRQ)	1990–present	http://www.hcup-us.ahrq.gov/sidoverview.jsp
Administrative—Others
Healthcare Cost Institute (HCCI) Database	Collection of claims data by nonpartisan, nonprofit organization on over 50 million people with employer‐sponsored insurance; annual reports published and data available to researchers to better understand determinants of US health care costs and utilization	Healthcare Cost Institute (HCCI)	2007–present	http://www.healthcostinstitute.org/
MarketScan® Research Databases	Database system linking healthcare usage through commercial insurance, Medicaid, and Medicare to analyze a variety of outcomes	Truven Health Analytics	1995–present	http://truvenhealth.com/your-healthcare-focus/analytic-research/marketscan-research-databases
Medicaid Analytic Extracts (MAX)	Contains enrollment information and paid claims at the state level for all Medicaid beneficiaries for inpatient and outpatient care, prescription medications	Centers for Medicare and Medicaid Services (CMS)	1999–2012	http://www.resdac.org/cms-data/file-family/Medicaid-Analytic-Extracts-MAX
National Association of Children's Hospitals (NACH) Case Mix Comparative Data Program	Database of 95 children's hospitals in the US with data to analyze inpatient populations, target quality improvement, enhance hospital utilization, & support advocacy on behalf of children's hospitals	National Children's Hospital Association	2000–2012	http://www.childrenshospitals.net/Am/Template.cfm?Section=Home3
Pediatric Health Information System (PHIS)	Database of clinical and financial data from 49 tertiary‐care pediatric hospitals in the US affiliated with the Children's Hospital Association; data can be linked across encounters within the same hospital	Children's Hospital Association	1992–present	http://www.childrenshospitals.org/
Quebec Congenital Heart Disease Database*	Database from 3 province‐wide administrative databases, capturing demographics, diagnoses, procedures, and health services used throughout a patient's life	McGill Adult Unit Congenital Heart Disease Excellence	1983–present	None

*Denotes cardiac‐specific databases.