Clinical registries
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The purpose of the clinical registeries in the area of cancer is to contribute to strengthening the quality of the healthcare provided to cancer patients.
For some cancer types, there will be a discrepancy in cancer incidence and rates between the clinical registries and Cancer in Norway, due to inclusion criteria in the clinical registries.
The clinical registries in the area of cancer are part of the Cancer Register and are established pursuant to § 1-7 of the Cancer Register Regulations. The Cancer Registry at the Director is responsible for data processing (§ 1-5). Creation and operation of quality registers in the cancer area is financed by quality register funds from Health South-East.
In order to fulfill the purpose, the quality registers contain detailed information on the investigation, treatment and follow-up of cancer patients.
Each clinical registry follows patient groups within a single diagnosis (for example, prostate cancer) or a group of diagnoses that naturally belong together (for example, coloncancer and rectal cancer).
The Cancer Registry of Norway currently operates nine national quality registers and three quality registers without national status.
Close collaboration with professional communities
The cancer registry works closely with clinicians, healthcare institutions, pathology laboratories and others to create legitimacy and anchoring in the national clinical environments in the work with the clinical registries.
The cooperation is ensured by the establishment of professional councils for each clinical registry with representatives from different regions and professional areas. The professional council ensures access to up-to-date medical knowledge to substantiate the clinical relevance and strength of the registry.
Publication of results
It is important for the professional community and the Norwegian Cancer Registry that the results from the clinical registries are used to improve the quality of the health service, and that the results become publicly known.
The results must be communicated through the following channels:
- In annual reports according to the annual report template from the National Service Environment
- On the websites of the national results service www.kvalitetsregistre.no
- On the Cancer Registrys website for clinical registers in the area of cancer
- As clinical statistics via the KREMT portal on Norsk Helsenett
- As administrative statistics via the KREMT portal on Norsk Helsenett
The clinical registries work actively with the distribution of the annual report, which is sent directly to hospitals and the patient association. Each year, the most important results are also highlighted in separate press releases.
Effect of the clinical registries
The clinical registries collect data on the examination and treatment of the patient group. The purpose is to use the data from the registries to illustrate practice in the hospitals, which can be of help in assessing practice in individual hospitals and for the patient group.
Example of the effect of the clinical registries:
The variation in surgical volume among the various hospitals in Norway is significant. Two hospitals operate around 60 patients, and two hospitals operate over 500 patients. According to the National Directorate of Health's national professional guidelines for cancer surgery (June 13, 2024), hospitals performing cancer surgery should use registry data and deviation reporting for continuous quality improvement and evaluate their results against national outcome goals, patient-reported data, and treatment standards from international literature.
Over several years, we have seen variations between low-volume hospitals and those with a larger volume. The treatment of breast cancer is becoming increasingly complex and resource-intensive, where the assessment of the type of treatment requires evaluation by multidisciplinary teams of specialists with high expertise and experience. Ensuring that all patients receive equal access to treatment is also an important principle.
Inquiries concerning the clinical registries of The Norwegian Cancer Registry can be directed to Liv Marit R. Dørum
liv.marit.ronning.dorum@fhi.no