History and Funding
The Medical Birth Registry of Norway (MBRN), initiated in 1967, is managed and funded by the Norwegian National Institute of Public Health. The Registry joined EUROCAT in 1998.
Population Coverage
The MBRN is population based and covers all births in Norway, irrespective of place of residence of the mothers. Approximately 60,000 births are registered annually. Births by non-resident mothers delivering in Norway account for approximately 0.2% of all births.
Sources of Ascertainment
Reporting to the Registry is compulsory. The Registry is based on the notification of births from the delivery units, and since 1999 also from the neonatal units for infants transferred to such units after birth. Congenital anomalies are most often registered at birth, but may be registered up to 1 year of age. Autopsy reports are collected for stillbirths with birth weight ≥500g, and for termination of pregnancy for fetal anomalies (TOPFAs) where an autopsy has been conducted, which is the case for the majority of TOPFAs.
The MBRN does not receive direct notification from cytogenetic laboratories or specific notification from pediatric cardiology departments.
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 and is the mother's decision up to gestational age of 12 weeks. After gestational age of 12 weeks, permission is required from the commission and these have been recorded from 1999 onwards. If a congenital anomaly is diagnosed, the upper limit is 18 weeks gestation (with exemptions); in severe situations terminations may also be carried out after 18 weeks. Since Dec. 1998, all TOPFAs are registered in the MBRN.
Stillbirth and Early Fetal Deaths
The official definition of a stillbirth for perinatal mortality statistical purposes is a fetal death before or during labour with a gestational age of ≥22 weeks or with a birth weight of ≥500g. Early fetal deaths/spontaneous abortions of fetuses with a gestational age of ≥16 weeks were included in the definition during the period 1967 to 2001, whereas those occurring with a gestational age of ≥12 weeks have been included from 2002 onwards.
Exposure Data Availability
Descriptive information, such as maternal history of disease and, since 1999, voluntary information of smoking habits and occupation, is also registered.
Denominators and Controls Information
Information available for malformations are available for the total population of births.
Registry Description References
Irgens LM. The Medical Birth Registry of Norway. Epidemiological research and surveillance throughout 30 years. Acta Obstet Gynecol Scand. 2000 Jun;79:435-9
Ethics & Consent
All research projects requiring the use of person identifiable information from the MBRN must have approval from the Regional Committees for Medical and Health Research Ethics (REC). Research using anonymised data from the MBRN are exempt from institutional review board approval in Norway.
Address for Further Information
Kari Klungsøyr (registry representative)
Email: kari.klungsoyr@fhi.no
Address:
Medical Birth Registry of Norway,
Norwegian Institute of Public Health,
Postbox 973 Sentrum,
5018 Bergen,
Norway
tel: +47 21 07 70 00
Last update: 01.03.2023