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.
Being updated
Annual reports for 2023 were published on 07.05.2024. See the reports here.
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).
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:
Operation volume distributed by operating hospital, year of operation 2023. From figure 2.20 from the Annual report of the National breast cancer registry 2023.
Operation volume at the various hospitals in Norway still varies considerably. The increased complexity of treatment plans is a reason to consider a reduction in the number of hospitals that diagnose and treat breast cancer. Increasing use of neoadjuvant systemic treatment with the need for broad interdisciplinary teams, access to plastic surgery expertise for primary reconstructions and de-escalated axillary surgery with a subsequent low number of axillary dissections at small hospitals are all examples of this.
Some hospitals have followed this recommendation and have merged into larger, more robust units. In 2023, Helse Nord-Trøndelag has decided to discontinue breast surgery in Namsos, the breast cancer patients belonging to Namsos will henceforth be operated on at St. Olav's hospital. In addition, there is the educational aspect and the robustness requirement, which is difficult to meet with small operating volumes.
The results in this year's report so far show that the recommendations relating to surgical treatment are complied with to a high degree with some exceptions and with some variation.
Inquiries concerning the clinical registries of The Norwegian Cancer Registry can be directed to Liv Marit R. Dørum