Norwegian health data
The health data infrastructure in Norway is of great value in terms of extent and quality and will significantly enhance the value of research projects with the different biobanks.
In the following, the different types of health data that may be accessed and used in research projects, are described.
69 health registries
Norway has a long history of establishing and maintaining health registers of good quality that track specific societal or health-related aspects. In total Norway have established and are running 17 central health registries that are mandatory and nation-wide. There are currently 52 national disease specific registries, also called medical quality registries, which capture deeper level clinical data on diagnosis and treatment parameters.
Out of the 17 central and nationwide registers, some of the most important for research projects within life sciences are the following:
- The Medical Birth Registry of Norway (MBRN) is a national health registry containing information about all births in Norway
- The Norwegian Patient Registry (NPR) provides a range of data on patients treated at hospitals including diagnosis labelled with ICD10 codes and procedure codes, as well as referrals to other specialist units or clinics
- The Primary Care Registry of Norway (KUHR) provides data on patients treated at primary care level from the entire country with longitudinal data on diagnosis and procedures
- The Norwegian Prescription Database (NorPD) contains data on all pharmacy dispensed drugs, including drug type using the ATC code classification, strength, defined daily dose, date of dispensation as well as other information related to drug dispensation
- The Norwegian Cause of Death Registry (NCoD) covers all deaths in Norway and cause of death are registered according to the ICD10 classification
With these five data sources at hand longitudinal data from birth to death and health care utilization during an entire life span can be retrieved.
Norway also have several disease specific registries of particular high standard, such as the Norwegian Cardiovascular Disease Registry and the Cancer Registry of Norway. They both contain detailed and longitudinal data regarding clinical endpoints, diagnosis, and treatment within cardiovascular diseases and cancer. The Cancer Registry is one of the oldest national registries in the world set up in 1951.
Non-health registers of value include the Norwegian Census Register that captures birth date, country of birth, residence, emigration, imigration and death as well as Statistics Norway that holds data on socioeconomic parameters such as attained educational level and income.
Below you may see an overview of all available health registries. More detailed information on the different health registries, and how to access, may be found on the web-page www.helsedata.no, administered by the Norwegian Directorate of eHealth. For the disease-specific registries (medical quality registries) more detailed information is available at https://www.kvalitetsregistre.no/. These information sources are currently only available in Norwegian.
Biobank phenotypic data of added value
Biobanks collect phenotypic information directly from patients or participants in studies. This serves as an added value for research, as the focus is on collecting phenotypic data that cannot be retrieved from the registries. This includes information on diet habits, environmental exposure and data on height and weight, as well as other anthropometric data. Some biobanks also collect patient reported outcomes measures (PROMs) and symptom burden using standardised instruments.
Additionally, some biobank studies do additional phenotypic characterisation at the baseline or consecutive visits, such as standard blood panel analyses, pain sensitivity measurements, spirometry and ECGs and so forth.
Some biobanks have consent to do phenotypic or genetic re-contact studies. This could be relevant when there is a need to do additional measurements on a sub-set of participants having a certain characteristic or perhaps a genetic profile of interest. Selected biobanks can be used as a tool to recruit subjects to prospective studies, even clinical studies.
Data directly derived from EMRs
The fully digitised public health care system in Norway is well suited for collecting a great variety of structured and unstructured deeper level phenotypic data directly from the electronic medical records, EMRs, provided that the informed consent is describing this as a route for additional data.
Data from electronic medical records are relevant when deeper level longitudinal data is demanded in a project and cannot be retrieved from the health registries or the biobank data. Examples of such data are electrocardiography (ECG) tracings, pathology reports, imaging or laboratory reports.
Data from electronic medical records are also vital for verification of your endpoint of interest, in particular when there is a risk of systematic misclassification using the disease and procedure codes from the registries. Some of the biobank have adjudicated endpoints as separate, and accessible endpoint registries, that can be re-used for multiple projects.