History and Funding

The registry started in 1979 and joined the EUROCAT network from the beginning of EUROCAT. The registry has been approved by the "Data Tilsynet" as a private registry for the purpose of research. There is no specific funding.

Population Coverage

The registry covers the island of Funen with surrounding small islands, situated in the middle of Denmark (Population-based I = All mothers resident in defined geographic area). The total number of births per year in Funen County is around 5,600. Births take place in 3 hospitals with homebirths less than 1% of all births.

Sources of Ascertainment

The registry is based on active case finding. Data sources for the registry include electronic discharge and out‐patient diagnosis from obstetric and pediatric departments, obstetric and paediatric hospital records with data on surgeries and examinations performed on the cases (x-ray, MR scans, echocardiography), birth notifications (up to 1999), death certificates (up to 1999), post‐mortem examinations and data from the cytogenetic laboratory.

The registry receives an annual list of all abnormal karyotypes diagnosed prenatally and postnatally in the registry area.

The out‐patient list of diagnosis from the paediatric department includes diagnosis from the paediatric cardiology center.

Maximum Age at Diagnosis

Up to 5 years for children seen at a paediatric department.

Terminations of Pregnancy for Fetal Anomaly (TOPFA)

Termination of pregnancy is legal before 12 weeks GA without special permission. After 12 weeks of gestation termination of pregnancy may be performed after permission from a local committee. If a congenital anomaly is diagnosed, the upper gestational age for termination is usually before viability (< 22 weeks). If a lethal malformation is diagnosed after fetal viability it may be possible to have permission to induce the birth. Terminations of pregnancy for fetal anomalies are registered in the EUROCAT registry.

Stillbirth and Early Fetal Deaths

From the beginning of the registry stillbirth definition was gestational age ≥ 28 weeks. From April 2004 the stillbirth definition was changed to gestational age ≥ 22 weeks. Stillbirths and fetal deaths/spontaneous abortions from 20 weeks are registered in the EUROCAT registry. The autopsy rate in stillbirths is around 70%.

Exposure Data Availability

Exposure information: medication during first trimester of pregnancy, maternal illness before and during first trimester of pregnancy.

Denominators and Controls Information

Data on births per year and maternal age distribution covering Funen County is available from National Danish Statistics (www.statistikbanken.dk).

Registry Description References

Garne E. 2004. Congenital heart defects – occurrence, surgery and prognosis in a Danish County. Scand Cardiovasc J:38:357-62
Garne E. 2006. Atrial and ventricular septal defects - epidemiology and spontaneous closure. J Matern Fetal Neonatal Med:19(5):271-6
Frøslev-Friis C, Hjort‐Pedersen K, Henriques CU, Krogh LN, Garne E. Improved prenatal detection of chromosomal anomalies. Dan Med Bul 2011; 58:A4293.

Ethics & Consent

The registry does not require ethics committee approval in order to collect and store data. The registry needs official approval for the database www.datatilsynet.dk. National legislation does not require informed consent in order to register a case with a congenital anomaly.

Address for Further Information

Dr Ester Garne,
Paediatric Department Hospital Lillebaelt,
Kolding Skovvangen 2-6
DK-6000 Kolding,
Tel: +45 7636 2219
Fax: +45 7636 3474
Email: ester.garne@rsyd.dk


Last update: 01.03.2023