Table 1.
Descriptions of the Included Articles
| Study | Included Birth Years | Study Location | Included CHD Subtypes (ICD Codes) | Inclusion of ECAs | Age Limit for Diagnosis | Source of Cases | Source of Death Information | Percentage of Traced Cases | Prevalence per 1000 Live Births |
|---|---|---|---|---|---|---|---|---|---|
| Dastgiri et al20 | 1980–1997 | Glasgow, Scotland | All CHD subtypes (ICD 10: Q20–26) | Author's response: excluded | No age limit | Glasgow register of Congenital Anomalies | Registrar General for Scotland | 97% (all congenital anomalies) | Not stated |
| Fixler et al21 | 1996–2003 | Texas, USA | SV physiology: HLH (ICD 9: 746.7), PVA‐IVS (746.0), SV (745.3), TA (746.1), d‐TGV (745.1) | Cases with trisomy 13 or 18 were excluded; 14.1% of HLH, 21.0% of SV, 15.3% of PVA‐IVS, 17.9% of TA, 9.3% of d‐TGV had ECAs | 1 year | Texas Birth Defects Registry | Medical records, death certificates, national death index | N/A, nontraced cases considered alive | Not stated |
| Frid et al22 | 1973–1997 | Sweden | AVSD (ICD 9: 745G, ICD 10: 21.2) | Cases with trisomy 13 or 18 were excluded; 68.9% had trisomy 21 | None stated | Register of Congenital Malformations, Register of Congenital Heart Malformations, and the Medical Birth Register; local registries at 4 pediatric cardiology centers were also searched for the beginning of the study period | National population database and medical records | 98.7% of all cases with AVSD | 0.3 |
| Garne23 | 1986–1998 | Funen County, Denmark | All CHD subtypes (EUROCAT criteria ie, ICD 10: Q20–26) | Cases with ECAs were included, 21% of cases | 5 years and diagnosed before 2002 | EUROCAT Registry of Congenital Malformations for Funen County | National registration system | 99.6% | 7.9 |
| Idorn et al24 | 1977–2009 | Denmark, Europe | HLH (ICD 10: Q234), PVA‐IVS (Q220), TA (Q224) | Cases with ECAs were included, 10% of cases | All ages | Danish register of congenital heart disease, local surgical registries, medical records, local fetal ultrasound registries | Civil registration system | Not stated | 0.4 |
| Jackson et al25 | 1979–1988 | Merseyside, England | All CHD subtypes (ICD 9: 745.00–747.49) | Cases with ECAs were included, percentage not stated | No age limit | Liverpool Registry of Congenital Malformations | Liverpool Registry of Congenital Malformations and hospital records | Not stated | 7.6 |
| Meberg et al26 | 1982–1996 | Vestfold, Norway, Europe | All CHD subtypes (no ICD codes stated) | Cases with ECAs were included, 20% of cases | None stated | Vestfold County Central Hospital, regional cardiology services, Child Health Centers and pediatric departments of the hospitals in neighboring counties | Hospital records | 100% | 10.2 |
| Miller et al27 | 1979–2003 | Metropolitan Atlanta, GA, USA | AVSD (ICD 9: 745.000–747.999) | Cases with trisomy 13 or 18 were excluded, 52.4% had trisomy 21 | None stated | Metropolitan Atlanta Congenital Defects Program | Hospital records and vital records from the state of Georgia, National Death Index | Not stated but number of untraced “assumed to be small” | Not stated |
| Moons et al28 | 2002 | Belgium | All CHD subtypes (no ICD codes specified) | Author response: cases with ECAs were included, percentage not stated | 5 years | Pediatric cardiology database covering 7 tertiary care centers in Belgium | Medical records | Not stated | 8.3 |
| Nembhard et al29 | 1996–2003 | Texas, USA | ICD 9 (746–747) | Cases with trisomy 13 or 18 were excluded, 20.7% of cases had ECAs | 1 year | Texas birth defects register | Death certificates linked to the Texas birth defects register | Not stated | 8.7 |
| Olsen et al30 | 1977–2006 | Denmark | All CHD subtypes: ICD 8: 746 to 747 (except 746.7 and 747.5–747.9) and ICD‐10: Q20–Q26 (except Q26.5–Q26.6) | Cases with ECAs were included, 20.0% of cases | 1 year | Danish National Registry of Patients | Civil registration system | 100% | 3.7 |
| Samanek and Voriskova31 | 1980–1990 | Bohemia, Czech Republic | All CHD subtypes (no ICD codes specified) | Not stated | None stated | Hospital records | Autopsy reports | Not stated | 6.2 |
| Tennant et al32 | 1985–2003 | Northeast England | All CHD subtypes (ICD 10: Q20–26) | Cases with ECAs were excluded, percentage not stated | 16 years of age (1985–2001) or, from 2001, to age 12 years | Northern Congenital Abnormality Survey | Office for National Statistics death registrations | 99% (of all congenital anomalies) | 6.8 |
| Wang et al (2011)33 | 1983–2006 | New York State, USA | TGV (ICD 9: 745.10–745.12, 745.19), ToF (745.2), HLH (746.7), AVA/S (746.3), CAT (745.0), AVSD (745.6), CoA (747.10) | Cases with ECAs were included, percentage not stated | None stated | Congenital Malformations Registry | Death certificates files maintained by the New York State Department of Health | 97% (of all congenital anomalies) | 9.5 |
| Wang et al (2013)34 | 1983–2006 | New York State, USA | TGV (ICD 9: 745.10–745.12, 745.19), ToF (745.2), HLH (746.7), CoA (747.10) | Cases with ECAs were included, percentage not stated | 2 years | Congenital Malformations Registry | Death certificate files maintained by the New York State Department of Health | Not stated | Not stated |
| Wang et al (2015)35 | 1991–2007 | Arizona, Colorado, Florida, Georgia (5 counties of Metropolitan Atlanta), Illinois, Massachusetts, Michigan, Nebraska, New Jersey, New York (excluding New York City), North Carolina, Texas | TGV (ICD 9: 745.10–745.12, 745.19), ToF (745.2), HLH (746.7), AVA/S (746.3), CAT (745.0), AVSD (745.6), CoA (747.10) | Cases with ECAs included, percentage not stated | None stated | Arizona Birth Defects Monitoring Program, Metropolitan Atlanta Congenital Defects Program, Colorado Responds to Children with Special Needs, Florida Birth Defects Registry, Illinois Adverse Pregnancy Outcomes Reporting System, Massachusetts Birth Defects Monitoring Program, Michigan Birth Defects Registry, Nebraska Birth Defects Registry, New Jersey Special Child Health Services Registry, New York State Congenital Malformations Registry, North Carolina Birth Defects Monitoring Program, and Texas Birth Defects Epidemiology, and Surveillance Branch | Death certificates, hospital discharge files (Arizona, Texas), medical records (Arizona, Texas), and the National Death Index (Georgia, Michigan) | Not stated | 2.1 |
AVA/S, aortic valve atresia or stenosis; AVSD, atrioventricular septal defect; CAT, common arterial truncus; CHD, congenital heart disease; CoA, coarctation of aorta; d‐TGV, dextro‐TGV; ECA, extracardiac anomaly; HLH, hypoplastic left heart; ICD, International Classification of Disease; IVS, intact ventricular septum; N/A, not available; PVA, pulmonary valve atresia (with ventricular septal defect or IVS); SV, single ventricle; TA, tricuspid atresia; TGV, transposition of great vessels; ToF, tetralogy of Fallot.