Member details

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History:

There has been no evidence-based data available for the occurrence of birth defects in Iran until 2000 when Tabriz Registry of Congenital Anomalies (TRoCA) was launched to investigate the epidemiology of congenital anomalies in the northwest region of the country. One of the main aims of TRoCA was to provide baseline information and framework (as a pilot programme) to set up a nationwide registry of birth defects in the country. As a result, the first national registry of congenital anomalies was then established in 2012 in Iran. The programme is called Epidemiology and Surveillance of Congenital Anomalies in Iran (ESCAI). TRoCA programme was accepted as a member of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) in the 2006 annual meeting in Uppsala, Sweden. Since 2012, TRoCA has also been accepted as a "World Affiliate" member of the European network of registries for the epidemiologic surveillance of congenital anomalies (EUROCAT).

Size and coverage::

TRoCA is a hospital-based registry and situated in the northwest of Iran covering all births and children in two university hospitals in the city of Tabriz. This city is one of the three major cities in the country. The programme is based on approximately 60-70% of all births in the area.

Legislation and funding:

The programme has been financially supported by the National Public Health Management Centre (NPMC), Tabriz University of Medical Sciences and Ministry of Health. TRoCA is located in Tabriz city run under the Tabriz University of Medical Sciences (TUoMS). This University is one of the five top universities in the country providing medical and health services for population in the northwest region of Iran.

Sources of ascertainment:

Data collection, process, analysis, use and evaluation of the programme are based on the guidelines suggested by the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Prenatal care is routinely provided for every pregnant woman on a regular basis (up to eight times) with 1–3 diagnostic sonographies during pregnancy. If needed, further diagnostic procedures (i.e., genetic tests for congenital anomalies, etc.) are performed. Termination of pregnancies is permitted for a few selected anomalies. TRoCA reports termination rate for major malformations. After birth, all children in maternity hospitals involved in the programme are normally examined by a gynaecologist, obstetrician, neonatologist, or pediatrician at birth. They are followed up until hospital discharge for general health status, maturity, and congenital anomalies.

Exposure information:

Some exposure information is available for mothers of all malformed infants. Other women giving births in all university hospitals with normal newborns routinely complete a similar form. They might be considered as matched control group.

Background information:

The minimum diagnostic data plus demographic information are collected in our registry for every neonate diagnosed with a birth defects.

Addresses and staff:

Professor Saeed Dastgiri,School of Medicine,Tabriz University of Medical Sciences,Tabriz, Post Code: 515665931,Iran.

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