Table 4.
Mortality in spina bifida‐affected births for surveillance period 2001‐2012 from registries contributing to the International Clearinghouse for Birth Defects Surveillance and Research
| Country‐registry | Surveillance period | Livebirths with spina bifida | Age at deathf | |||||
|---|---|---|---|---|---|---|---|---|
| Day 1 | Day 2‐Day 6 | Day 7‐Day 27 | Day 28‐Month 12 | Year 1‐4 | Year 5 and above | |||
| N | % | % | % | % | % | % | ||
| Argentina‐RENACa | 2009‐2012 | 228 | 9.6d | – | – | – | – | |
| Colombia‐Bogotáb | 2001‐2012 | 104 | 4.8 | – | – | – | – | – |
| South America‐ECLAMCa | 2001‐2012 | 1700 | 6.5 | 2.5 | 1.6 | 0.8 | – | – |
| Czech Republic | 2001‐2012 | 139 | 0.7 | 2.9 | 3.6 | 1.4 | 1.4 | 1.4 |
| France‐Parisb | 2001‐2012 | 34 | 2.9 | 2.9 | 2.9 | – | – | |
| Germany‐Saxony Anhalt | 2001‐2012 | 41 | 0 | 0 | 0 | 0 | 0 | – |
| Italy‐Lombardy | 2003‐2012 | 25 | 0 | 0 | 0 | 0 | 4.0 | – |
| Italy‐Tuscany | 2001‐2012 | 22 | 4.5 | 0 | 0 | 0 | – | – |
| Maltaa | 2001‐2012 | 28 | 0.0 | 3.6 | 3.6 | 0 | 0 | – |
| Netherlands‐Northern | 2001‐2012 | 55 | 7.3 | 18.2 | 12.7 | 0 | 0 | 0 |
| Slovak Republic | 2001‐2012 | 179 | 0 | 5.0 | – | – | – | – |
| Spain‐ECEMC | 2001‐2012 | 23 | 8.7 | 0 | – | – | – | 0 |
| Sweden | 2001‐2012 | 263 | 1.5 | 2.7 | 1.9 | 1.5 | 0.4 | 0.4 |
| Ukraine‐OMNI‐Net | 2001‐2012 | 169 | 3.0 | 2.4 | 1.8 | 14.8 | 1.8 | – |
| UK‐Wales | 2001‐2012 | 78 | 6.4 | 1.3 | 1.3 | 0 | 1.3 | 0 |
| Mexico‐Nuevo Leóna | 2011‐2012 | 23 | 0 | 0 | – | – | – | – |
| Mexico‐RYVEMCEa | 2001‐2012 | 160 | 3.1 | 1.3 | – | – | – | – |
| USA‐Arkansas | 2001‐2012 | 177 | 6.2 | 2.3 | 1.1 | 3.4 | 2.8 | 1.1 |
| USA‐Atlanta | 2001‐2008 | 112 | 0.9 | 0.9 | 1.8 | 0.9 | 0 | 0 |
| USA‐Texas | 2001‐2012 | 1578 | 3.5 | 1.7 | 1.0 | 2.2 | 1.1 | 0.4 |
| USA‐Utah | 2001‐2012 | 213 | 6.1 | 1.4 | 0.9 | 0.9 | 0 | 0.5 |
| Iran‐TROCA | 2004‐2012 | 22 | 0.0 | 4.5 | – | – | – | – |
| Israel‐Soroka Medical Centerc | 2001‐2012 | 47 | 6.4 | 14.9 | 14.9 | 4.3 | 2.1 | – |
| Total | 5420 | 4.2 | 2.7 | 1.7e | 1.9e | 1.1e | 0.4e | |
Abbreviations: ECEMC, Registry of the Spanish Collaborative Study of Congenital Malformations; ECLAMC, Latin American Collaborative Study of Congenital Malformations; LB, livebirth; MCAR, Malta Congenital Anomalies Registry; OMNI‐Net, Ukraine Birth Defects Prevention Program; RENAC, National Network of Congenital Anomalies of Argentina; RYVEMCE, Mexican Registry and Epidemiological Surveillance of External Congenital Malformations; SB, Stillbirth; 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.
Percentage refers to first‐week mortality.
Excludes programmes that have no data on mortality for selected age at death.
A hyphen means that the registry did not report follow‐up data for that time period.