INSPIRE - information about drug cancer treatment

Which types of cancer have data about drug cancer treatment in the Cancer Registry?

The first two Inspire projects collected, quality assured, and processed drug cancer treatment data for lung and breast cancer patients (see INSPIRE:lung cancer and INSPIRE:breast cancer (Norwegian only)). There are some cancers that are not affiliated with a quality registry, e.g. kidney cancer. Therefore, INSPIRE:Kidney cancer (Norwegian only) became the third Inspire project.  It focused on investigating how to process drug data for cancer types without quality registries.

Systemic anti-cancer treatment (SACT) is now regularly collected and processed and available from all cancer patients, regardless of the type of cancer they have. The treatment is linked to the patient and not directly to the specific disease case.

Treatment administered in hospitals is available from throughout the country except from the Northern Regional Health Authority. There is some variation between regions in terms of what is available prior to 2019. Prescribed treatment is available from 2019 with nationwide coverage. 

What data is collected and what are any limitations?

The data collected on drug cancer treatment, completeness, limitations, etc. are described in the report from INSPIRE:lung cancer (and the INSPIRE:breast cancer report) and on the Cancer Registry's website metadata (information about the variables). The list below provides more detailed references to the various topics.

• INSPIRE:lung cancer (report Norwegian only)
  • Sources of drug cancer treatment, chapter 3.1
  • Overview of data collection (degree of coverage), which hospitals and years, chapters 3.2 and 3.3 
  • Limitations in data collection, chapter 3.4
  • Data Quality, Chapter 4
• www.metadata.kreftregisteret.no (all variables in the Cancer Registry, sorted by categories)
  • Variables for drug cancer treatment (filtered by medical treatment, the Lung Cancer Registry and variables that can be dispensed) 

How do you access data?

Application for disclosure of data on drug cancer treatment, see  www.helsedata.no 

Counseling and help

If you need advice in connection with data on drug cancer treatment, what data you can apply, application, etc., contact the Data Delivery Unit.

If you need advice in connection with research projects and possible cooperation with the Cancer Registry, related to drug cancer treatment, please contact Espen Enerly.

Publications from INSPIRE

Using data from INSPIRE, one can refer to:

INSPIRE: A new opportunity for cancer pharmacoepidemiology research. Enerly, E., Holmstrøm, L., Skog, A., Knudsen, K. O., Nygård, J. F., Møller, B., & Ursin, G. (2021). INSPIRE: A new opportunity for cancer pharmacoepidemiology research. Norwegian Epidemiology, 29(1-2).

Summary of articles

Cancer drugs

Enerly et al.INSPIRE: INSPIRE: A new opportunity for cancer pharmacoepidemiology research, Norwegian Epidemiologists 2021;29(1-2): 29-33.

Background: The information available to the Cancer Registry of Norway on surgery and radiotherapy is highly complete, but information on drug cancer treatment has been inadequate. The INSPIRE project was initiated to automatically and electronically collect data on cancer medication from the hospitals' systems for the Cancer Registry of Norway and is a unique collaboration between 12 pharmaceutical companies, the pharmaceutical industry (LMI), the Norwegian Cancer Society, Inven2, the Cancer Registry of Norway and the regional health authorities.

Main findings: The project has shown that it is possible to collect information about drug cancer treatment for the Cancer Registry. The first data that will be available for further use will be on lung cancer, then breast cancer before other cancers will follow suit. 

The significance and transfer value of the study: Data from the project are an integral part of the Cancer Registry's data collection and can be handed over to research etc. in the same way as other data in the Cancer Registry. This provides completely new opportunities for research and quality assurance of patient treatment with cancer drugs in the Norway future.

INSPIRE is a collaboration between the public, private and voluntary sectors.