About the Department of Health Registries
Located in Bergen, the department runs various registers: the Medical Birth Registry of Norway (MBRN) (1967), the Biobank Register (2004), the anonymised Abortion Register (2006),the Cardiovascular Disease Registryas well as the data unit for the Norwegian Mother and Child Cohort Study. Furthermore, the department has a unit that serves researchers and other interested parties.
The MBRN was established in 1967 following the thalidomide catastrophe, where a seemingly harmless sleeping pill caused severe deformities in more than 10,000 babies worldwide. A main objective of the MBRN was then, as now, to identify new trends in birth defects as early as possible by means of epidemiological surveillance. The other main objective is epidemiological research on health problems originating in pregnancy or neonatally. The MBRN was the world’s first national medical birth registry. Since it was established in 1967 it has developed greatly and today represents one of the world’s most comprehensive medical birth registers, collaborating to an increasing extent in international research.
In 2002, the MBRN became a department in the Division for Epidemiology at the Norwegian Institute of Public Health (NIPH). The NIPH manages the MBRN and is responsible for data processing. The MBRN is based at and also closely co-operates with the University of Bergen. In 2001, the legal basis of the MBRN was re-authorized in terms of the MBRN-Regulation under the Personal Health Data Filing System Act.
Linkage with other registers
To ensure data quality, the MBRN is routinely linked with the Central Population Register. For health surveillance and research, the MBRN can be linked with the other central health registers (the Cancer Registry, the Cause of Death Register, the National Prescription Database, the Surveillance System for Communicable Diseases, the Tuberculosis Registry and the Childhood Vaccination Register). MBRN data are only available with the necessary permissions defined by law or regulation.
The MBRN participates extensively in international collaboration and is a founding member of the International Clearing-house for Birth Defects Monitoring Systems. To improve surveillance and research, the Clearing-house wanted to set up an International Centre for Birth Defects (ICBD). In strong competition with other countries and with support from the government, the MBRN succeeded in establishing this centre in Norway. ICBD was active in Bergen in the period 1989-92.
In 1997, the MBRN took the initiative to establish the Nordic Association of Medical Birth Registries (NOMBIR) where all 5 Nordic countries participate. NOMBIR is a continuation of a collaboration set up in 1971 (“Arbeidsgruppe for fødselsstatistikk” = Working group for birth statistics) under the Nordic Medical Statistics Committee (NOMESCO) with the purpose of establishing Nordic medical birth statistics.
Since 1979, the EU has provided funding to EUROCAT, a European network for surveillance of birth defects. Not being an EU member, Norway was unable to participate in this network until 1998, when the EEA agreement opened for membership. In 2007, the MBRN became a full member as anonymised records are now delivered to EUROCAT’s central database. The central database enables an effective and rapid surveillance of birth defects while at the same time providing a basis for research.
Access to research data and statistics
The department will contribute to making data and information easily accessible, and has a service unit extracting data files from the MBRN for researchers and other interested parties.