Clinical registries
Annual reports for 2022 were published on 10.05.2023. See the reports here.
(For summaries in English, see the bottom of the page)
NB. 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).
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 Registrie's 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 dissemination 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 National Guidelines for lymphoma recommends that lymphoma diagnoses should be consulted with a university hospital. Histological type of non-Hodgkin's lymphoma is of great importance for prognosis and choice of treatment.
The analysis "Non-Hodgkin lymphoma diagnosis left outside, and without consultation with university hospitals distributed by hospital" was first carried out in 2016. The result showed that 7 percent of the patients did not receive the recommended consultation at a university hospital with experience, expertise and the necessary equipment for immunohisto-chemical and molecular lymphoma diagnostics. The professional council believed that this figure should be lower and set a quality target that less than 5 percent of patients should be diagnosed without consultation with a university hospital. The clinical register has worked to improve results over several years.
Non-Hodgkin lymphoma diagnosis made outside, and without consultation with university hospitals in 2020, 2021 and 2022 distributed by hospital. From fig. 3.5 in Annual report for lymphoid malignancies 2022.
The figure shows which hospitals do not always follow the guidelines on consultation. The local hospitals where all patients have had their diagnosis confirmed at a university hospital or have treated fewer than 10 patients are not shown in the figure, but they are included in the column for the whole of Norway.
In 2022, we see that the target has been reached by a good margin. For the first time, the national target that over 95 percent of lymphoma patients should be diagnosed with a consultation at a university hospital has been reached. This is the result of systematic work over several years.
It is worth noting that for both Førde Hospital and Molde Hospital, only one patient makes an impact in the analysis (due to few patients).
Last updated by: Monica Silva monica.silva@kreftregisteret.no
