Table 1.
Description of birth defects registries included in the spina bifida mortality study from registries contributing to the International Clearinghouse for Birth Defects Surveillance and Research
| Country‐registry | Type of registry | Coverage | Ascertainment period | Stillbirth definition | ETOPFA allowed | Prenatal screening services |
|---|---|---|---|---|---|---|
| Argentina‐RENAC | H | N | Hospital discharge | >500 g | No | Yes, but no official programme |
| Colombia‐Bogotá | H | R | 1st day | >500 g | Yes, since 2006 | Yes |
| Colombia‐Cali | H | R | 1st day | >500 g | Yes, since 2006 | Yes |
| South America‐ECLAMC | H | Ra | Hospital discharge | >500 g | Noe | Yes |
| Czech Republic | P | N | 15 y | 22 wks or >500 g | Yes | Yes |
| France‐Paris | P | R | 28 d | 22 wks | Yes | Yes |
| Germany‐Saxony Anhalt | P | R | 1 y | >500 g | Yes | Yes, since 1990 |
| Italy‐Lombardy | P | R | 6 y | 23 wks | Yes | Yes |
| Italy‐Tuscany | P | R | 1 y | 20 wks | Yes | yes |
| Malta‐MCAR | P | N | 1 y | 22 wks | No | Yes, gradually introduced |
| Netherlands‐Northern | P | R | 10 y | 24 wks | Yes | Yes, since 2007 |
| Slovak Republic | P | N | Hospital discharge | >500 g | Yes | Yes |
| Spain‐ECEMC | H | Rb | 3 d | 24 wks or 500 gd | Yes, since 1985 | Yes |
| Sweden | P | N |
Before 1987 1 mo, After 1987 1 y |
until 2006:28 wks, 2007 and after: 22 wks |
Yes, registration since 1999 | Yes, since the early 1980s |
| UK‐Wales | P | R | 18 y | 24 wks | Yes | Yes, since 2003 |
| Ukraine‐OMNI‐Net | P | R | 1 y |
until 2006:28 wks/>1000 g 2006 and after: 22 wks/>500 g |
Yes | Yes |
| Mexico‐Nuevo León | P | R | 6 d | Not included | No | Yes, only US |
| Mexico‐RYVEMCE | H | R | 3 d |
>=20 gestational weeks or >=500 g |
No | No |
| USA‐Arkansas | P | S | 2 y | 20 wks | Yes, until 20 wks | Yes |
| USA‐Atlanta | P | R | 6 y | 20 wks | Yes | Yes |
| USA‐Texas | P | S | 1 y | 20 wks | Yes | Yes |
| USA‐Utah | P | S | 2 y | 20 wks | Yes | Yes |
| Iran‐TROCA | H | R | 1 y | 20 wks | Yes, restrictions since 2013 | Yes |
| Israel‐SMC | H | Rc | Hospital discharge | Not included | Yes, but not registered | Yes |
Column‐type of programme: H = hospital‐based, P = population‐based; column‐coverage: N = national, R = regional, S = statewide.
Abbreviations: 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; 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; SMC, Soroka Medical Center; TROCA, Tabriz Registry of Congenital Anomalies; UK, United Kingdom; USA, United States of America.
Several regions in South America.
Several regions in Spain currently covering around 18% of total births.
Referral area of one hospital.
Column‐stillbirth definition: if gestational age of death is not determined (since 1980).
Column‐ETOPFA allowed except for anencephaly.