Congenital anomalies data set

If you, your unborn baby or child have a suspected or confirmed rare disease or congenital anomaly, the NCARDRS collects the following data from NHS clinical teams to create a registration record:

• name, address and postcode
• sex and ethnic background
• date of birth/age
• NHS number/hospital number
• height/weight and BMI
• physical health and genetic data

Data is also collected about family members where necessary. We collect this data from across the NHS, including from:

• screening and testing laboratories
• maternity care services
• neo natal paediatric care
• tertiary care services
• child health records
• routine radiology records

Some of the data held in NCARDRS registration records is already held by NHS England, including:

• hospital attendance data
• births data
• primary care prescriptions data
• mortality data

We also collect data from:

• rare disease research studies (where patients have given their consent to the data sharing)
• patient self-reporting (either directly or through patient registers, where consent allows)
• the British Pregnancy Advice Service (BPAS) - data on terminations of pregnancy due to a fetal anomaly only
• the UK Health Security Agency to help respond to health emergencies such as Zika virus or COVID-19, such as vaccine and testing data

Data items collected (where available) for the NCARDRS:
1. Local ID
2. Baby’s name
3. Baby’s hospital number
4. Baby’s NHS Number
5. Baby’s address and postcode if different from mother
6. Date of booking (first check up in pregnancy)
7. Date of birth
8. Date of death
9. Place of booking
10. Place of delivery
11. Mother’s name
12. Mother’s hospital number
13. Mother’s NHS Number
14. Mother’s address and postcode at conception, booking and birth
15. Mother’s date of birth
16. Father’s name
17. Sex
18. Number of babies delivered
19. Birth weight
20. Gestation
21. Number of previous pregnancies
22. Number of previous pregnancies with anomalies
23. Assisted conception
24. Consanguinity
25. Siblings with anomalies
26. Mother’s ethnicity
27. Mother’s smoking habits
28. Mother’s BMI
29. Mother’s occupation
30. Father’s occupation
31. Father’s age
32. Family history of anomalies
33. Mother’s folic acid use
34. Mother’s drug use
35. Mother’s alcohol use
36. Mother’s medical history
37. Method of labour
38. Method of delivery
39. Type of birth
40. Survival
41. When anomaly/ rare disease was discovered
42. First positive prenatal test
43. Karyotype
44. Post-mortem performed
45. Syndromes and malformations
46. Estimated Date of Delivery (EDD)
47. Tests carried out and results
48. Screening, anomaly scan, diagnostic test
49. Syndromes and malformations prenatally diagnosed
50. Outcome of pregnancy (including miscarriage/stillbirth/termination)
51. Consultant
52. Details about post-mortems
53. Cause of death
54. Procedures
55. Mother’s country of birth
56. Place of death
57. Referral
58. Date of admission/discharge
59. Ethnicity of baby
60. Rare diseases
61. Morbidities association with condition
62. GP details
63. Prescription drugs
64. Father’s identifiers: DOB, address, NHS number
65. Family history of congenital anomalies and rare diseases

Please note the NCARDRS data specification is currently under review and will be updated soon.