TABLE 7.
Percentage of live births surviving at various timepoints from day 1 to 5 years including overall survival. Data are presented for total CLP for all 22 reporting ICBDSR programs and data for subclassifications where available.
| Percentage surviving |
||||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Sub-classification | Region | Center | Live births Count | Day <1 |
Days 1–6 |
Days 7–27 | 28 Days–11 Months | Years 1–4 | 5 years + | Overall survival |
| Total | Spain | ECEMC hospitals reporting ETOPFA | 101 | 99 | 99 | 99 | 99 | 99 | 99 | 99 |
| Iran | 156 | 98.7 | 98.1 | 98.1 | 98.1 | 98.1 | 98.1 | 98.1 | ||
| Germany | Saxony-Anhalt | 443 | 99.1 | 98 | 97.1 | 96.2 | 96.2 | 96.2 | 96.2 | |
| Italy | Lombardy | 52 | 100 | 100 | 100 | 96.2 | 96.2 | 96.2 | 96.2 | |
| UK | Wales | 336 | 99.4 | 97 | 96.1 | 95.8 | 95.8 | 95.5 | 95.5 | |
| Italy | Tuscany | 184 | 98.4 | 96.7 | 96.7 | 95.1 | 95.1 | 95.1 | 95.1 | |
| Slovak | 447 | 100 | 95.3 | Not | Not recorded | Not | Not | 94.6 | ||
| Republic | recorded | recorded | recorded | |||||||
| France | Paris | 308 | 96.8 | 95.8 | 94.5 | Not recorded | Not | Not | 94.2 | |
| recorded | recorded | |||||||||
| Spain | ECEMC hospitals not reporting ETOPFA | 557 | 95.5 | 93.7 | 93.7 | 93.7 | 93.7 | 93.7 | 93.7 | |
| Czech | 1,096 | 99.4 | 97.9 | 97.4 | 94.5 | 93.8 | 93.2 | 93.2 | ||
| Republic | ||||||||||
| Netherlands | EUROCAT Northern Netherlands | 466 | 98.7 | 97.4 | 95.7 | 93.8 | 92.9 | 92.7 | 92.7 | |
| Ukraine | OMNI-Net BD Program | 191 | 99.5 | 96.3 | 94.2 | 92.7 | 91.6 | 91.6 | 91.6 | |
| Mexico | RYVEMCE | 1,124 | 94 | 91.4 | 91.4 | 91.4 | 91.4 | 91.4 | 91.1 | |
| Sweden | 2,972 | 98.4 | 96.4 | 95.2 | 92.8 | 92.1 | 90.9 | 90.9 | ||
| Colombia | Cali | 11 | 100 | 100 | 100 | 90.9 | 90.9 | 90.9 | 90.9 | |
| USA | Arkansas | 498 | 97.4 | 94.6 | 92.6 | 90 | 89.2 | 89 | 89 | |
| USA | Atlanta | 392 | 96.7 | 92.9 | 89.8 | 87.8 | 87.5 | 87.2 | 87.2 | |
| USA | Utah | 699 | 95 | 91.6 | 90.1 | 87.6 | 86.7 | 86.4 | 86.4 | |
| Argentina | RENAC | 955 | 100 | 86.3 | 86.3 | 86.3 | 86.3 | 86.3 | 86.3 | |
| Malta | 34 | 100 | 94.1 | 91.2 | 85.3 | 85.3 | 85.3 | 85.3 | ||
| S-America | ECLAMC | 2,594 | 90.4 | 86 | 83.2 | 82.8 | 82.8 | 82.8 | 82 | |
| Mexico | Nuevo Léon | 44 | 97.7 | 93.2 | 86.4 | 81.8 | 81.8 | 81.8 | 81.8 | |
| Israel | 54 | 100 | 94.4 | 92.6 | 83.3 | 83.3 | 81.5 | 81.5 | ||
| Total averages | 98 | 95 | 93.8 | 91.5 | 91.3 | 91.1 | 91 | |||
| Isolated | Spain_ | ECEMC reporting ETOPFA | 77 | 100 | 100 | 100 | 100 | 100 | 100 | 100 |
| Italy | Lombardy | 37 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | |
| Malta | 20 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | ||
| Germany | Saxony-Anhalt | 371 | 100 | 99.7 | 99.7 | 99.7 | 99.7 | 99.7 | 99.7 | |
| France | Paris | 254 | 99.6 | 99.6 | 99.6 | Not recorded | Not recorded |
Not recorded |
99.6 | |
| UK | Wales | 253 | 100 | 99.6 | 99.6 | 99.6 | 99.6 | 99.6 | 99.6 | |
| Spain_ | ECEMC hospitals not reporting ETOPFA | 388 | 99.5 | 99.5 | 99.5 | 99.5 | 99.5 | 99.5 | 99.5 | |
| Slovak Republic |
348 | 100 | 99.1 | Not recorded |
Not recorded | Not recorded |
Not recorded |
99.1 | ||
| Ukraine | OMNI-Net BD Program | 156 | 100 | 100 | 99.4 | 98.7 | 98.7 | 98.7 | 98.7 | |
| Netherlands | EUROCAT Northern Netherlands | 391 | 99.7 | 99.2 | 99 | 98.7 | 98.5 | 98.5 | 98.5 | |
| Sweden | 2,437 | 99.8 | 99.5 | 99.3 | 98.7 | 98.6 | 97.6 | 97.6 | ||
| USA | Utah | 511 | 99.6 | 98.6 | 98.6 | 97.7 | 97.5 | 97.5 | 97.5 | |
| Mexico | RYVEMCE | 878 | 98.1 | 97.4 | 97.4 | 97.4 | 97.4 | 97.4 | 97.2 | |
| Argentina | RENAC | 696 | 100 | 97.1 | 97.1 | 97.1 | 97.1 | 97.1 | 97.1 | |
| S-America | ECLAMC | 1,673 | 98.7 | 97.8 | 97 | 97 | 97 | 97 | 96.9 | |
| Colombia | Cali | 11 | 100 | 100 | 100 | 90.9 | 90.9 | 90.9 | 90.9 | |
| Israel | 45 | 100 | 93.3 | 91.1 | 88.9 | 88.9 | 88.9 | 88.9 | ||
| Isolated averages | 99.7 | 98.9 | 98.6 | 97.8 | 97.8 | 97.7 | 97.7 | |||
| Multiple Congenital Anomalies | Spain | ECEMC hospitals reporting ETOPFA | 20 | 100 | 100 | 100 | 100 | 100 | 100 | 100 |
| UK | Wales | 55 | 100 | 90.9 | 90.9 | 89.1 | 89.1 | 89.1 | 89.1 | |
| Germany | Saxony-Anhalt | 56 | 96.4 | 94.6 | 91.1 | 87.5 | 87.5 | 87.5 | 87.5 | |
| Italy | Lombardy | 15 | 100 | 100 | 100 | 86.7 | 86.7 | 86.7 | 86.7 | |
| Spain | ECEMC not reporting ETOPFA | 110 | 89.1 | 84.5 | 84.5 | 84.5 | 84.5 | 84.5 | 84.5 | |
| Slovak Republic |
90 | 100 | 85.6 | Not recorded |
Not recorded | Not recorded |
Not recorded |
84.4 | ||
| France | Paris | 37 | 89.2 | 86.5 | 86.5 | Not recorded | Not recorded |
Not recorded |
83.8 | |
| Malta | 11 | 100 | 90.9 | 81.8 | 81.8 | 81.8 | 81.8 | 81.8 | ||
| Netherlands | EUROCAT Northern Netherlands | 35 | 94.3 | 94.3 | 85.7 | 80 | 80 | 80 | 80 | |
| Ukraine | OMNI-Net BD Program | 24 | 100 | 83.3 | 79.2 | 79.2 | 79.2 | 79.2 | 79.2 | |
| USA | Utah | 116 | 89.7 | 85.3 | 82.8 | 77.6 | 75 | 75 | 75 | |
| Mexico | RYVEMCE | 141 | 81.6 | 72.3 | 72.3 | 72.3 | 72.3 | 72.3 | 71.6 | |
| Sweden | 331 | 94 | 89.1 | 84 | 76.4 | 73.7 | 71.6 | 71.6 | ||
| Argentina | RENAC | 232 | 100 | 59.1 | 59.1 | 59.1 | 59.1 | 59.1 | 59.1 | |
| S-America | ECLAMC | 921 | 75.5 | 64.6 | 58.1 | 57.1 | 57.1 | 57.1 | 54.8 | |
| Israel | 9 | 100 | 100 | 100 | 55.6 | 55.6 | 44.4 | 44.4 | ||
| MCA averages | 94.35 | 86.32 | 83.84 | 78.68 | 78.35 | 77.52 | 77.1 | |||
| Genetic / Chromosomal | Spain | ECEMC hospitals reporting ETOPFA | 4 | 75 | 75 | 75 | 75 | 75 | 75 | 75 |
| UK | Wales | 28 | 92.86 | 85.71 | 75 | 75 | 75 | 75 | 75 | |
| Spain_ | ECEMC hospitals not reporting ETOPFA | 59 | 81.36 | 72.88 | 72.88 | 72.88 | 72.88 | 72.88 | 72.88 | |
| Mexico | RYVEMCE | 105 | 76.19 | 66.67 | 66.67 | 66.67 | 66.67 | 66.67 | 66.67 | |
| Netherlands | EUROCAT Northern Netherlands | 40 | 92.5 | 82.5 | 72.5 | 57.5 | 50 | 47.5 | 47.5 | |
| Slovak Republic |
13 | 100 | 61.54 | Not recorded |
Not recorded | Not recorded |
Not recorded |
46.15 | ||
| Germany | Saxony-Anhalt | 16 | 87.5 | 68.75 | 56.25 | 43.75 | 43.75 | 43.75 | 43.75 | |
| Sweden | 204 | 89.22 | 71.57 | 65.2 | 49.02 | 44.61 | 42.16 | 42.16 | ||
| Argentina | RENAC | 27 | 100 | 40.74 | 40.74 | 40.74 | 40.74 | 40.74 | 40.74 | |
| France | Paris | 17 | 70.59 | 58.82 | 35.29 | Not recorded | Not recorded |
Not recorded |
35.29 | |
| USA | Utah | 72 | 70.83 | 51.39 | 41.67 | 31.94 | 29.17 | 26.39 | 26.39 | |
| Czech Republic |
33 | 93.94 | 72.73 | 66.67 | 39.39 | 33.33 | 24.24 | 24.24 | ||
| Ukraine | OMNI-Net BD Program | 11 | 90.91 | 72.73 | 54.55 | 36.36 | 18.18 | 18.18 | 18.18 | |
| Italy | Lombardy | 1 | 100 | 100 | 100 | 0 | 0 | 0 | 0 | |
| Malta | 3 | 100 | 66.67 | 66.67 | 0 | 0 | 0 | 0 | ||
| Genetic/chromosomal averages | 88.1 | 69.8 | 63.4 | 45.7 | 43.1 | 42 | 40.9 | |||
Note: Not all registries reported all deaths at all timepoints, data in this table reports deaths where data was returned. Where data were confirmed as not reported by a registry this have been presented in the table and the overall survival covers only the time period for which data were returned.
Abbreviations: CLP, Cleft lip with palate; ECEMC, Registry of the Spanish Collaborative Study of Congenital Malformations; ECLAMC, Latin American Collaborative Study of Congenital Malformations; ETOPFA, early termination of pregnancy for fetal anomaly; ICBDSR, International Clearing House for Birth defects Surveillance and Research; MCA, Multiple Congenital Anomalies; RENAC, National Network of Congenital Anomalies of Argentina; RYVEMCE, Mexican Registry and Epidemiological Surveillance of External Congenital Malformations; SMC, Soroka Medical Center; UK, United Kingdom; USA, United States of America.