History and Funding

The Hungarian Congenital Abnormality Registry (HCAR) was established in 1970 and contributed data to EUROCAT from 1998. The HCAR is run by the national Hungarian government/ health authority and is funded by the National Institute of Health Development under government financing. The aim of the Registry is to detect new teratogenic exposures, produce prevalence statistics, and to audit prenatal screening for congenital malformations. The Registry is also a member of ICBDMS since 1973. On-line notification started from 1st of October 2009.

Population Coverage

The Registry is population-based, which covers all mothers resident in Hungary and presently covers about 97,000 births per year. The number of resident mothers giving birth outside the country is rare, therefore population coverage is thought to be 100% of all births.

Sources of Ascertainment

Reporting is compulsory (Act: Protection of security of health related data, XLVII, 1997) and multi- source. Sources include maternity units, paediatric departments, cytogenetic labs, prenatal centers, child health services, pathology institutions, cardiology units.

Majority of cases are notified by hospital doctors with some notifications from community and GP doctors. At county level, hospital reporting ratios are monitored. 20 HCAR representatives work in all regions of Hungary besides of HCAR contact persons of all capital and countryside hospitals.Cases are diagnosed up to 1 year of age.

All congenital anomalies and chromosomal abnormalities (ICD-10th revision) Chapter XXVII Q00-Q99 are recorded by HCAR.

The following are not recorded by the Registry:

  • Balanced chromosomal anomalies
  • Metabolic disorders
  • Mendelian conditions (with no structural anomalies)
  • Teratomas
  • Tumours

Maximum Age at Diagnosis

Maximum Age at Diagnosis Up to 1 year of age.

Terminations of Pregnancy for Fetal Anomaly (TOPFA)

Termination of pregnancy is legal up to 18 weeks of gestation in the case of severe fetal anomaly. Termination of pregnancy is legal up to 20 weeks of gestation (24 weeks in case delayed diagnosis) if the probability of genetic or teratogenic hazard to the fetus has reached 50%. Pregnancy can be terminated, independent of gestational age, if there is a high risk to the health of the pregnant woman, or any lethal anomaly is diagnosed in the fetus. Hungary has a national prenatal screening policy.

Stillbirth and Early Fetal Deaths

The official stillbirth definition is: gestational age ≥ 24 weeks of pregnancy. All stillbirths are registered. Some early fetal deaths/spontaneous abortions are notified. There is no lower gestational age or weight limit for reporting early fetal deaths. The Registry is notified of early neonatal deaths (0-7 days) and infant deaths up to 1 year due to malformations.

Exposure Data Availability

A separate nationwide case-control system is used to collect exposure data, which can be used for special studies.

Denominators and Controls Information

Maternal age and monthly distribution denominators are provided by the National Hungarian Central Statistics Office. Based on HCAR, the case-control surveillance system information is available on 3 controls for selected congenital anomalies delivering in the same district in the same time period.

Registry Description References

The registry description can be found at www.bridgetodata.org.

Ethics & Consent

The registry does not require ethics committee approval in order to collect and store data. However all studies that use identifiable registry data always require ethics committee approval. National legislation does not require informed consent in order to register a baby with a congenital anomaly.

Address for Further Information

Dr Melinda Csáky-Szunyogh
National Institute of Health Development Budapest,
Nagyvárad tér 2,
1096 Hungary

Tel: +36-1-4288235
Email: csszunyogh.melinda@oefi.antsz.hu