History and Funding
Tabriz Registry of Congenital Anomalies (TRoCA) was initiated in 2000, but the registry officially started in 2003. It was then accepted as a member of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) in 2006. The programme has been financially supported by the National Public Health Management Centre (NPMC) and local public health authorities.
Population Coverage
TRoCA is a hospital‐based registry and situated in the northwest of Iran covering all births and children in four 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 (20 000 to 30 000 births per year) in the area.
Sources of Ascertainment
The sources of ascertainment of congenital anomalies are hospital records, routine hospital discharge forms and paediatric discharge forms. The subjects comprised all births registered/notified to those university-hospitals from 2000 up to now with a primary diagnosis under one of the following headings: nervous system anomalies, genito-urinary tract and kidney, anomalies of limb, chromosomal anomalies, cleft lip with/without palate, congenital heart disease, musculoskeletal and connective tissue anomalies, digestive system anomalies, eye and ear anomalies and other anomalies.
For each infant, basic demographic information and a detailed clinical description of the major birth defect(s) are collected using a standard questionnaire. Pathologic confirmation of the defect is used as criteria of inclusion of fetal deaths or stillbirths in this programme. Two midwives and a nurse have been assigned in TRoCA to code/classify the birth defects using the International Classification of Diseases (ICD)‐based coding of the British Paediatric Association Classification of Disease.
For inclusion in the study, an infant must have been born to a woman who resided in the defined population area of Tabriz city at the time of the infant’s birth.
Maximum Age at Diagnosis
Up to the age of 1 year.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legally allowed in Iran. According to the current laws in the country, the permission for termination is only issued before the 20th week of pregnancy. Currently, in Iran, one of the main reasons for termination of pregnancy is congenital anomalies. Many of the serious maternal and fetal conditions are now easily permitted for abortion in the country.
In addition to those conditions, if three specialist physicians confirm that the outcome of pregnancy may be harmful for any other reason to mother/family during pregnancy or after birth, the abortion will also be permitted. We do not include malformations in terminations of pregnancy in our registry. However we study those anomalies for various research purposes.
Stillbirth and Early Fetal Deaths
The official stillbirth definition is: birth weight ≥ 400 gr(s) or gestational age ≥ 20 weeks. All stillbirths are registered. Some early fetal deaths/spontaneous abortions are also notified. TRoCA registers early neonatal deaths (i.e., 0-7 days) and infant deaths (i.e., 1 year or less) due to anomalies.
Exposure Data Availability
General epidemiological data and basic characteristic information are gathered for all births. Some exposure information (i.e., history of medications etc) is also collected from mothers of all malformed infants.
Denominators and Controls Information
The area population is estimated according to the official reports for each year from the regional Statistics & Administration Bureau. Other women giving births in the university hospitals with normal newborns routinely complete a similar form. They might therefore be considered as matched control subjects.
Registry Description References
The registry details can be found at:
Ethics & Consent
Identity‐related data are always kept strictly confidential in every part of the registration, data management and access to the registry information. Privacy and confidentiality policies of TRoCA have formally been approved by the Medical Ethics Committee of Tabriz University of Medical Sciences.
Address for Further Information
Prof Saeed Dastgiri
Programme Director
Tabriz Registry of Congenital Anomalies (TRoCA)
School of Medicine
Tabriz University of Medical Sciences
Tabriz, Post Code: 5166615739
Iran
Tel: +98 914 415 7039
Fax: +98 411 336 4673
http://troca.tbzmed.ac.ir