The project's aim was to increase researchers' use of national health registers by
1. Improving and standardizng documentation of the contents of the registers
2. Simplify access to data
3. Develop the systems for secure data management and analysis
4. Contribute with statistical methods support and development
The project has transferred results and expertise to the Health Data Program / Health Analysis Platform, but continue to offer methods support through UiB's core facility BIOS
Norway has invested and is investing huge resources in collection, storage and management of health data in national registries. A main purpose of these registries is research. The research infrastructure is however inadequate for most of these health registries. Research is mostly performed by specialized groups. Better use of these resources requires investments in data- and analyses support for researchers. Health registry research is an area where medical research in Norway has a clear competitive advantage over most non-Nordic countries. Scientific use of Norwegian biobanks and biobank infrastructure also requires systematic and improved access to diagnostic and other information from national health registries. This infrastructure proposal is an important opportunity to strengthen the use of national health registry data for research in Norway. Although the Norwegian registry data are in place, and in principle available for research, it still takes months and often years to actually get the data ready for analyses and publication. These processes are very inefficient also because the research datasets in general are not made available to other research groups but kept within the group that initiated the project.
The national infrastructure proposed here for registry based medical research will develop support systems and services for the Norwegian research community. The Bergen Department of the Norwegian Institute of Public Health (NIPH-Bergen) and the Department of Global Public Health and Primary Care (DPH) at the University of Bergen (UoB) are co-located in Bergen. This site holds the Medical Birth Registry of Norway (MBRN), the new National Cardiovascular Disease Registry (NCVDR) and the Causes of Death Registry (CoDR). NIPH-Bergen is also responsible for the Registry of Pregnancy Termination. UoB/NIPH will be responsible for two major work packages in the infrastructure. Other components of the infrastructure will improve research use of the Norwegian Patient Registry (NPR), The FS-system for historical patient (hospital discharge diagnoses) data and a number of clinical registries and registry infrastructure elsewhere in Norway. This is detailed in a series of dedicated work packages. The infrastructure will also develop secure solutions for data access, transfer and management during research.