Content of the registry
The clinical registry contains extended information on the diagnosis, treatment and follow-up of patients.
The Norwegian Pancreatic Cancer Registry does not have national status, but health professionals and researchers are collaborating with the Cancer Registry towards the aim of attaining national status. To reach this goal, the work includes implementing measures related to improving clinical practice that are presented in the annual report of the Norwegian Pancreatic Cancer registry.
Population and geography
The clinical registry contains information on all cases of pancreatic cancer (ICD-10 C25) registered in Norway.
Data collection period
From 2020 to the present day.
Variables
The clinical registry contains data on diagnosis, treatment and follow-up of the patients.
You can find information about variables included in the dataproduct from the clinical registry in the variable explorer.
Go to the variable overview to create variable lists and to see detailed information about the variables in this data source.
For information on all data content in the Cancer Registry, go to the metadatabase of the Cancer Registry of Norway.
For information about variables in the registry, contact the quality registry manager.
Data quality
The annual report from the Norwegian Pancreatic Cancer Registry presents information about data quality for selected variables and status of clinical reporting.
Completeness and validity
The Cancer Registry of Norway (CRN) receives and collects information from different data sources; clinical notifications are sent using the CRN electronic reporting service (KREMT), pathology reports from laboratories, data from radiotherapy machines, information from hospital cancer medication systems, the Central Population Registry, the Norwegian Cause of Death Registry and the Norwegian Patient Registry (NPR), which ensures a high degree of validity and completeness of registered data.
The data quality of the clinical registry is assessed as very high because the Cancer Registry undertakes a specific assessment of all pathology reports received from the laboratories and compiles them with other data sources mentioned above.
Specific clinical variables are for mostly registered in the submitted clinical notifications, and therefore the completeness of these variables corresponds with the completeness of clinical reporting. Completeness of clinical reporting and completeness of cancer cases registered at the Cancer Registry are calculated regularly while working on the annual clinical reports.
For variables collected from pathology reports, completeness is generally high.
Comparabilty
Coding and classification of data mainly follows international standards and allows for comparison with other countries.
Actuality
Data for a calendar year are finalised in the spring of the following year and continues to be updated if new information becomes available.
Reliability
The reliability of data of the Cancer Registry of Norway is optimised by specialisation in coding skills of employees registering the data. The Cancer Registry works closely with the other Nordic cancer registries to ensure consistent coding practices.
Open data
The annual report from the Norwegian Pancreatic Cancer Registry presents results and improvement measures for diagnosis and treatment of pancreatic cancer.
Statistics on cancer cases are published in the Cancer Registry of Norway’s online statistics bank. The statistics bank contains incidence of cancer cases in Norway available up to and including the last available year of diagnosis. The statistics can be stratified by diagnostic groups, sex, age, period of diagnosis and regions such as counties and regional health trusts.
The Nordic cancer registries collaborate on publishing cancer statistics for the Nordic countries in NORDCAN. The Norwegian data is from the Cancer Registry of Norway.
Criteria for data access
The data sources have different purposes and are regulated by different laws and regulations. In order to access information from the data sources, what you plan to use the information for must be in accordance with the purpose of the data source.
The types of approvals and documents you must submit to access information depend on what you are applying for, what you are going to use the information for and how you are going to process it. We therefore recommend that you take the time to familiarize yourself with the application guides before starting the application process:
Application guide for anonymous, aggregated data (statistical data)
Application guide for personally identifiable data
Purpose
The purpose of the Norwegian Pancreatic Cancer Registry is
- to contribute to improving the quality of health care provided for cancer patients
- to conduct, promote and provide a foundation for research to establish new knowledge about the cause, diagnosis, course of illness and effect of treatment
In accordance with the Cancer Registry Regulation § 1-3.
Legal authority
The clinical registry is a medical quality registry without requirement for consent from the registered persons. It is authorised by the Health Registry Act § 8 (lovdata.no), and regulated in accordance with the Cancer Registry Regulation (lovdata.no).
Apply for access to data
Contact the data custodian for more information on how to access data from the registry.
Data controller and data processor
The Norwegian Institute of Public Health is both the data controller and the data processor.
Prices for access to data
Helsedataservice charges for the processing of applications submitted via helsedata.no, while the data custodians charge for data preparation and making the data material available. Helsedataservice and the data custodians will issue separate invoices.
See information about invoicing and the processing time at the Cancer Registry of Norway.