Table 3.
Total number of births, total number of spina bifida cases and prevalence per 10 000 births, proportion of livebirth among total cases of spina bifida, proportion of stillbirths among total cases of spina bifida, and proportion of ETOPFA among total cases of spina bifida for surveillance period 2001‐2012 from registries contributing to the International Clearinghouse for Birth Defects Surveillance and Research
| Country‐registry | Type of registry | Surveillance period | Total births | Total cases of spina bifida | Total prevalence per 10 000 total births (95% CI) |
Livebirth % (95% CI) |
Stillbirth % (95% CI) |
ETOPFA % (95% CI) |
|---|---|---|---|---|---|---|---|---|
| Argentina‐RENACa | H | 2009‐2012 | 422 173 | 241 | 5.7 (5.0, 6.5) | 94.6 (91.0, 96.8) | 5.0 (2.9, 8.5) | – |
| Colombia‐Bogotáb | H | 2001‐2012 | 356 454 | 113 | 3.2 (2.6, 3.8) | 92.0 (85.6, 95.6) | 8.0 (4.2, 14.4) | – |
| Colombia‐Calib | H | 2011‐2012 | 12 762 | 3 | 2.4 (0.5, 6.9) | 100 (43.9, 100) | 0 (0, 56.2) | – |
| South America‐ECLAMCa | H | 2001‐2012 | 1 847 181 | 1819 | 9.9 (9.4, 10.3) | 93.5 (92.2, 94.5) | 6.5 (5.5, 7.8) | – |
| Czech Republic | P | 2001‐2012 | 1 273 386 | 367 | 2.9 (2.6, 3.2) | 37.9 (33.1, 42.9) | 1.4 (0.6, 3.2) | 60.8 (55.7,65.6) |
| France‐Paris | P | 2001‐2012 | 319 636 | 184 | 5.8 (5.0, 6.7) | 18.5 (13.2, 24.7) | 0.5 (0.1, 3.0) | 81.0 (74.7, 86.0) |
| Germany‐Saxony Anhalt | P | 2001‐2012 | 208 108 | 121 | 5.8 (4.8, 7.0) | 33.8 (26.1, 42.7) | 1.7 (0.5, 5.8) | 64.5 (55.6, 72.4) |
| Italy‐Lombardy | P | 2003‐2012 | 133 182 | 64 | 4.8 (3.7, 6.1) | 39.1 (28.1, 51.3) | 1.6 (0.3, 8.3) | 59.4 (47.2, 70.5) |
| Italy‐Tuscany | P | 2001‐2012 | 352 844 | 108 | 3.1 (2.5, 3.7) | 20.4 (13.9, 28.9) | 2.8 (1.0, 7.9) | 76.5 (68.1, 83.8) |
| Malta‐MCARa | P | 2001‐2012 | 48 202 | 31 | 6.4 (4.4, 9.1) | 90.3 (75.1, 96.7) | 9.7 (3.3, 24.9) | – |
| Netherlands‐Northern | P | 2001‐2012 | 221 846 | 106 | 4.8 (3.9, 5.8) | 53.8 (44.3, 63.0) | 7.5 (3.9, 14.2) | 38.7 (30.0, 48.2) |
| Slovak Republic | P | 2001‐2012 | 667 992 | 224 | 3.4 (2.9, 3.8) | 79.9 (74.2, 84.6) | 2.2 (1.0, 5.1) | 17.9 (13.4, 23.4) |
| Spain‐ECEMC | H | 2001‐2012 | 259 285 | 156 | 6.0 (5.1, 7.0) | 14.7 (10.0, 21.2) | 0.6 (0.1, 3.5) | 84.6 (78.1, 89.4) |
| Sweden | P | 2001‐2012 | 1 230 002 | 583 | 4.7 (4.4, 5.1) | 45.1 (41.1, 49.2) | 0.3 (0.1, 1.2) | 54.5 (50.5, 58.5) |
| Ukraine‐OMNI‐Net | P | 2001‐2012 | 347 418 | 378 | 10.9 (9.8, 12.0) | 44.7 (39.8, 49.8) | 3.2 (1.8, 5.5) | 47.4 (42.4, 52.4) |
| UK‐Wales | P | 2001‐2012 | 404 385 | 297 | 7.3 (6.5, 8.2) | 26.3 (21.6, 31.6) | 1.0 (0.3, 2.9) | 72.7 (67.4, 77.5) |
| Mexico‐Nuevo Leóna | P | 2011‐2012 | 168 661 | 23 | 1.4 (0.9, 2.1) | 100 (85.7, 100) | 0 (0, 14.3) | – |
| Mexico‐RYVEMCEa | H | 2001‐2012 | 264 306 | 169 | 6.4 (5.5, 7.4) | 94.7 (90.2, 97.2) | 5.3 (2.8, 9.8) | – |
| USA‐Arkansas | P | 2001‐2012 | 470 593 | 207 | 4.4 (3.8, 5.0) | 85.5 (80.1, 89.7) | 4.8 (2.6, 8.7) | 7.2 (4.4, 11.6) |
| USA‐Atlanta | P | 2001‐2008 | 428 976 | 180 | 4.2 (3.6, 4.9) | 62.2 (55.0, 69.0) | 8.9 (5.5, 14.0) | 25.0 (19.2, 31.8) |
| USA‐Texas | P | 2001‐2012 | 4 668 071 | 1737 | 3.7 (3.6, 3.9) | 90.8 (86.4, 92.1) | 4.0 (3.2, 5.1) | 5.1 (4.2, 6.3) |
| USA‐Utah | P | 2001‐2012 | 624 990 | 249 | 4.0 (3.5, 4.5) | 85.5 (80.6, 89.4) | 4.4 (2.5, 7.7) | 10.0 (6.9, 14.4) |
| Iran‐TROCA | H | 2004‐2012 | 160 755 | 25 | 1.6 (1.0, 2.3) | 88.0 (70.0, 95.8) | 4.0 (0.7, 19.5) | 8 (2.2, 24.9) |
| Israel‐SMCc | H | 2001‐2012 | 158 544 | 47 | 3.0 (2.2, 3.9) | 100 (92.4, 100) | 0 (0, 7.6) | – |
| Total | 2001‐2012 | 15 049 752 | 7432 | 4.7 (4.6, 4.8) | 73.2 (72.2, 74.3) | 4.1 (3.7, 4.6) | 33.6 (32.0, 35.2)d |
Abbreviations: CI, confidence Interval; ECEMC, Registry of the Spanish Collaborative Study of Congenital Malformations; ECLAMC, Latin American Collaborative Study of Congenital Malformations; ETOPFA, Elective Termination of Pregnancy for Fetal Anomalies; H, hospital‐based programme; MCAR, Malta Congenital Anomalies Registry; OMNI‐Net, Ukraine Birth Defects Prevention Program; P, population‐based programme; RENAC, National Network of Congenital Anomalies of Argentina; RYVEMCE, Mexican Registry and Epidemiological Surveillance of External Congenital Malformations; SMC, Soroka Medical Center; TROCA, Tabriz Registry of Congenital Anomalies; UK, United Kingdom; USA, United States of America.
ETOPFA not allowed.
ETOPFA not registered.
Data on liveborn children with spina bifida from one hospital.
Excludes programmes where ETOPFA is unavailable, or does not report on ETOPFA.