Treasures of the registers

MoBa is a unique study that emerged from the Medical Register of Births, and that gathers detailed information about 100,000 children and their parents. Foto: IStockphoto

Research groups in Bergen have been mining medical registers to perform
epidemiological research for almost 150 years. Now, scientists come to Bergen
from far and wide in order to search for answers in Bergen’s medical archives.

In the 1960s, pregnant women in many countries were prescribed the apparently
innocent medicine Thalidomide to help them sleep and to eliminate morning sickness. As a result, more than 10,000 babies were born with serious deformities due to their mothers’ use of this medicine in pregnancy.

This was the background to the establishment in Norway of the Medical Register of Births in 1967. This register collects information about all births in Norway, the names and identity numbers of the children and their parents, and information about the health of the mother and about any complications that arise in the course of pregnancy and the birth itself. The objective of the programme is to follow
the extent of congenital malformations and  to study problems of health in connectionwith pregnancy and birth.

The register hasgrown enormously in scope since it was set up, and the results of research that has used it are continually being published. For use in research projects, the register can be linked to other comprehensive health registers, such as the Cancer Register, the Register of Causes of Death and the Prescription Register. All this means that the Register of Births is an extremely powerful research instrument.

The Medical Register of Births was run by the University of Bergen for many years until it was formally affiliated to the Norwegian Institute of Public Health in 2002. The register still maintains close links with the University of Bergen, which is probably the reason why it has been more widely used in research and by the health authorities than other Scandinavian registers of births. The register is also ever more frequently used in international research projects. Today, it is located in what was once the Bergen’s asylum for lepers, in a building that also houses the University’s Department of Social Medicine. The choice of location was not a random one: the building once hosted the world’s first national health register; the Norwegian Leprosy Register. This register was established in 1865, and it played an important role in Gerhard Armauer Hansen’s discovery of the leprosy bacterium in1873. As a result, we can say that Bergen has had a tradition of basing research on data registers from the very beginnings of such registers.

At present, most data register research at the University of Bergen and Haukeland
University Hospital is coordinated in the Locus for Register Epidemiology, which is led from the Department of Social Medicine. Important activities include the Heart, Bloodvessel and Stroke Register - Western Health Region, the National Multiple Sclerosis Register, the Norwegian Kidney Biopsy Register and MoBa, the Norwegian Mother and Child Study. MoBa is a unique study that emerged from the Medical Register of Births, and that gathers detailed information about 100,000 children
and their parents. Both biological material and questionnaire data are used in the study, which starts in the early stages of pregnancy and follows each family until the child starts school. The aim of MoBa is to identify, and then to prevent, illnesses in mothers and children.

Among other things, it has developed statistical tools that are adapted to the structure of the study, with the result that we can demonstrate and quantify relationships between certain gene variants and specific illnesses. MoBa is now so well established that it has given rise to yet another register: MoBaTann, a biobank of milk teeth that have been collected from children who are participating in MoBa.
Such teeth can provide unique information about environmental effects, nutrition and child development, and the links with MoBa and the Medical Register of Births offer scientists excellent opportunities to study causes and effects and other relationships.

The article is published in Features 2009/2010

For use in research projects, the Medical Register of Births can be linked to other comprehensive health registers, such as the Cancer Register, the Register of Causes of Death and the Prescription Register. Foto: Bjørn Erik Larsen