Data sources
The National Congenital Anomalies Data Collection
The NCADC is a national data collection on babies with a congenital anomaly. It is based on cases of congenital anomalies reported to state and territory data collections, including congenital anomaly registers, perinatal data collections and admitted patient data collections. Data from Western Australia are not yet available as part of this collection. More information about jurisdictional congenital anomaly data sources can be found in State and territory data collections.
Some baby and maternal data elements in the NCADC are sourced from the NPDC. Jurisdictions provide a common identifier so cases with congenital anomalies in the NCADC can be linked to their respective NPDC record.
Collection and reporting scope
The scope of the NCADC includes births (both live births and stillbirths) with a congenital anomaly and terminations of pregnancy due to a congenital anomaly (if this is available). This includes conditions in the tenth edition of the ICD10-AM, including Chapter 17 (Q00-Q99), P35 (congenital viral diseases) and P371 (congenital toxoplasmosis). In practice, what can be supplied varies by jurisdiction and this impacts national reporting. The AIHW has harmonised the data for reporting, so the scope for reporting from the NCADC is narrower than the scope for the collection as a whole.
- Congenital anomaly data supplied using the Royal College of Paediatrics and Child Health’s Classification of Diseases (ICD-9-BPA) classification (this included some records from New South Wales) were mapped to the ICD-10-AM (tenth edition) to report data on a single classification.
- The notification period for this report includes anomalies diagnosed up to 12 months of age as all jurisdictions, except Tasmania, could supply this data; Tasmania could supply data for the birthing episode only. Some, but not all, jurisdictions collect data based on notification periods greater than 12 months. For example, South Australia collects anomalies data in children up to 5 years of age. Analysis of the data supplied by South Australia in 2017 indicates around 15% of anomalies in their 2017 birth cohort were diagnosed after 12 months of age and were excluded from this national report.
- Some anomalies were excluded from national reporting because they were not collected across all jurisdictions or because they did not pose significant health concerns for a baby in the first year of life or have major social or cosmetic outcomes. Excluded anomalies were based primarily on those listed by the World Health Organization (WHO), the United States Centers for Disease Control and Prevention (CDC) and the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). A list of reporting exclusions (PDF 123kB) is provided for information.
- Terminations of pregnancy before 20 weeks’ gestation were excluded as these data were not available across all jurisdictions.
- Only records able to be matched with the NPDC were included for reporting.
Over 400 congenital anomaly condition codes at the 4-character level of the ICD-10-AM are in scope for this report. Around 62% of these are counted in ‘other’ categories. Table 1 lists these reporting inclusions and their respective ICD-10-AM codes. A list that includes the names of the anomalies in ‘other’ categories can be found in Data tables.
Type of anomaly |
ICD-10-AM (tenth edition) |
---|---|
Chromosomal |
|
Trisomy 21 (Down syndrome) |
Q90, Q90.0–Q90.2, Q90.9 |
Trisomy 18 (Edwards syndrome) |
Q91.0–Q91.3 |
Trisomy 13 (Patau syndrome) |
Q91.4–Q91.7 |
Female sex chromosome (including Turner syndrome) |
Q96.0–Q96.4, Q96.8–96.9, Q97.0–Q97.3, Q97.8 |
Male sex chromosome (including Klinefelter syndrome) |
Q98, Q98.0–Q98.8 |
Other chromosomal |
Q92, Q92.0–Q92.8, Q93.0–Q93.8, Q95.1–Q95.5, Q95.8, Q99.0-Q99.2, Q99.8 |
Circulatory system |
|
Transposition of the great vessels |
Q20.1, Q20.3, Q20.5 |
Cardiac septal anomalies |
Q21.0–Q21.2, Q21.4, Q21.8 |
|
Q21.0 |
|
Q21.1 |
|
Q21.2 |
|
Q21.4, Q21.8 |
Tetralogy of Fallot |
Q21.3 |
Pulmonary valve atresia |
Q22.0 |
Hypoplastic left heart syndrome |
Q23.4 |
Patent ductus arteriosus |
Q25.0 |
Coarctation of aorta |
Q25.1 |
Other circulatory system |
Q20.0, Q20.2, Q20.4, Q20.6, Q20.8, Q22, Q22.1–Q22.6, Q22.8, Q23, Q23.0–Q23.3, Q23.8, Q24, Q24.0–Q24.6, Q24.8, Q25.2–Q25.8, Q26.0–Q26.6, Q26.8, Q27.1–Q27.4, Q27.8, Q28.0–Q28.3, Q28.8 |
Digestive system |
|
Cleft lip and/or palate |
Q35,Q35.1-Q35.3, Q35.9, Q36 |
Tracheo-oesophageal fistula |
Q39.1–Q39.2 |
Anomalies leading to oesophageal obstruction (without fistula) |
Q39.0, Q39.3–Q39.4 |
Congenital hypertrophic pyloric stenosis |
Q40.0 |
Atresia/stenosis of intestines |
Q41.0–Q41.2, Q41.8–Q41.9, Q42.0–Q42.3, Q42.8 |
Hirschsprung disease |
Q43.1 |
Other digestive system |
Q38.7–Q38.8, Q39.5–Q39.6, Q39.8, Q40.1–Q40.3, Q40.8, Q43.2–Q43.4, Q43.6–43.8, Q44.0, Q44.2–Q44.7, Q45.0–Q45.3, Q45.8 |
Eye, ear, face and neck and integuments |
|
Anophthalmia and microphthalmia |
Q11.1–Q11.2 |
Microtia (with congenital absence, atresia, and stricture of external auditory canal) |
Q17.2 with Q16.1 |
Other eye, ear, face and neck and integuments |
Q10.6-Q10.7, Q11.0, Q12.2, Q13.1, Q13.3-Q13.4, Q13.8, Q15.0, Q16.0, Q16.1 (without Q17.2), Q80, Q80.0-Q80.4, Q80.8, Q81, Q81.0-Q81.2, Q81.8, Q82.0-Q82.4, Q83.0-Q83.1, Q84.0, Q85.0-Q85.1, Q85.8, Q86.0-Q86.2, Q86.8, Q87, Q87.0-Q87.5, Q87.8, Q89.0-Q89.4, Q89.7–Q89.8 |
Genital organs |
|
Doubling anomalies of the female genitalia |
Q51.1–51.4, Q52.1 |
Hypospadias |
Q54, Q54.0-Q54.3, Q54.8–Q54.9 |
Anomalies related to indeterminate sex |
Q56, Q56.0–Q56.4 |
Other genital organs |
Q50.0–Q50.6, Q51.0, Q51.5–Q51.9, Q52.0, Q52.2, Q52.7, Q53.0, Q55.0, Q55.3–Q55.5, Q55.8 |
Musculoskeletal system |
|
Congenital hip dislocation |
Q65, Q65.0–Q65.2 |
Talipes |
Q66, Q66.00, Q66.01, Q66.0-Q66.1, Q66.4 |
Polydactyly |
Q69, Q69.0-Q69.2, Q69.9 |
Syndactyly |
Q70, Q70.0–Q70.2, Q70.4, Q70.9 |
Reduction defect of upper limb(s) |
Q71.0–Q71.6, Q71.8–Q71.9 |
Reduction defect of lower limb(s) |
Q72, Q72.0–Q72.9 |
Congenital diaphragmatic hernia |
Q79.0 |
Exomphalos |
Q79.2 |
Gastroschisis |
Q79.3 |
Other musculoskeletal system |
Q65.3–Q65.5, Q65.9, Q67.5, Q73, Q73.0–Q73.1, Q73.8,Q74, Q74.0, Q74.2–Q74.5, Q74.8, Q75, Q75.1, Q76.1–Q76.3, Q76.5, Q76.7, Q77.0- Q77.8, Q78, Q78.0–Q78.6, Q78.8-Q78.9, Q79.1, Q79.4, Q79.6 |
Nervous system |
|
Neural tube defects |
Q00,Q01, Q05, Q05.0–Q05.9, Q07.0 |
Anencephaly and related anomalies |
Q00, Q00.1-Q00.2 |
|
Q001 |
|
Q002 |
Encephalocele |
Q01, Q01.0-Q01.2, Q01.8-Q01.9 |
Spina bifida (including Arnold-Chiari malformation) |
Q05, Q05.0–Q05.9, Q07.0 |
Microcephaly |
Q02 |
Congenital hydrocephalus |
Q03, Q03.0-Q-3.1, Q03.8-Q03.9 |
Other nervous system |
Q04, Q04.0–Q04.6, Q04.8, Q06.0–Q06.4, Q06.8, Q07.8 |
Respiratory system |
|
Choanal atresia |
Q30.0 |
Hypoplasia and dysplasia of lung |
Q33.6 |
Other respiratory system |
Q30.1, Q30.3, Q31.0–Q31.3, Q31.8, Q32.0–Q32.4, Q33, Q33.0, Q33.1–Q33.5, Q33.8, Q34.0–Q34.1, Q34.8 |
Urinary system |
|
Renal agenesis/hypoplasia |
Q60, Q60.0–Q60.6 |
Cystic kidney disease |
Q61, Q61.0–Q61.5, Q61.8–Q61.9 |
Exstrophy of urinary bladder |
Q64.1 |
Other urinary system |
Q62, Q62.0–Q62.8, Q63, Q63.0–Q63.3, Q63.8, Q64.0, Q64.2–Q64.3, Q64.5-Q64.6, Q64.8 |