Annual reports for 2021 were published on 09.06.2022. See the reports here.
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:
In 2005, surgery for ovarian cancer was centralized in Norway based, among other things, on data from the predecessor to the Gynecological Cancer Register, the OVANOR registry. In a study of patients with advanced ovarian cancer, it was seen that patients operated on at regional hospitals had better survival compared to patients operated on at local hospitals.
In a later publication, it has been shown that survival is still higher after eight years of observation. These results were an important reason why ovarian cancer surgery is centralized to a few centers with special expertise.
The registry's professional council has chosen to set a target that a minimum of 80 percent of operations for ovarian cancer should be performed at one of the university hospitals with special expertise.
The regional health authorities have centralized treatment so that most operations are carried out at the five university hospitals that have a center with special expertise in gynecological oncology. The recommended centralization is based on better long-term survival and that it is more cost-effective.
The fact that some are still operated on at local hospitals can have various reasons, such as the need for urgent surgery or that the patients have been operated on because they suspect a benign disease.
Proportion of operations for ovarian cancer within each health region that are performed in a hospital with specialist expertise. Green field indicates indicator target. From fig. 3.20 in annual report for gynecological cancer 2021.
The figure shows the proportion of cancer patients in the four health regions who have been operated on at Radiumhospitalet in Oslo, Haukeland in Bergen, Stavanger University Hospital, St. Olavs Hospital in Trondheim or at UNN in Tromsø. Here you can see that the share for the entire country in total is well within the indicator target with a share of 86.4 percent of those operated on, and all health regions meet the indicator target for centralisation.
Last updated by: Monica Silva monica.silva@kreftregisteret.no
