Table 1.
The number* and subtype of NTDs across the legacy registers† and NCARDRS for EMSY, Northern, South West, Thames Valley and Wessex from 2000 to 2019
| Legacy regional registers† (2000–2014) | NCARDRS (2015–2019)* |
Total | |
| NTD subgroup | |||
| Anencephaly | 1378 | 604 | 1982 |
| Spina bifida | 1546 | 581 | 2127 |
| Encephalocele | 356 | 143 | 499 |
| All cases with an NTD* | 3234 | 1307 | 4541 |
| Sex | |||
| Male | 998 (30.9%) | 353 (27.0%) | 1351 |
| Female | 1031 (31.9%) | 356 (27.2%) | 1387 |
| Intersex | 24 (0.7%) | 0 (0.0%) | 24 |
| Not known | 1181 (36.5%) | 598 (45.8%) | 1779 |
| Birth outcome | |||
| Live birth | 520 (16.1%) | 227 (17.4%) | 747 |
| Stillbirth | 89 (2.8%) | 20 (1.5%) | 109 |
| Termination | 2585 (79.9%) | 1016 (77.8%) | 3601 |
| Miscarriage (20–24 weeks) | 37 (1.1%) | 30 (2.3%) | 67 |
| Unknown | 3 (0.1%) | 14 (1.0%) | 17 |
| Region | |||
| EMSY | 1046 (32.3%) | 359 (27.5%) | 1405 |
| Northern | 711 (22.0%) | 219 (16.8%) | 930 |
| South West | 681 (21.1%) | 329 (25.2%) | 1010 |
| Thames Valley | 311 (9.6%) | 199 (15.2%) | 510 |
| Wessex | 485 (15.0%) | 201 (15.4%) | 686 |
| Total | 3234 | 1307 | 4541 |
A small number of cases for 2015 were collected by the legacy registers, and some cases prior to 2015 were collected by NCARDRS.
*The number of cases of each NTD subtype does not sum to the total number of cases of NTDs as 63 cases (1.4%) had more than one NTD and are included in each appropriate category.
†Legacy refers to those registers in existence prior to the transition to NCARDRS with sufficient data quality to be included in the trend.
EMSY, East Midlands and South Yorkshire; NCARDRS, National Congenital Anomaly and Rare Disease Registration Service; NTD, neural tube defect.