New metadata bank from the Cancer Registry of Norway
Published: 20.11.2019. Updated 02.12.2019
The new system, named ELVIS (Electronic List of Variables In Systems), will hopefully be of use to researchers and others who wish to apply for data from the Cancer Registry, and who need an overview of what information is available.
Siri Larønningen is the project manager for the project, and she is satisfied that there is now a comprehensive and structured overview of what one can find in the Cancer Registry of Norway.
- This has become especially important after the national clinical registries on cancer were established. The number of variables in the Cancer Registry increased from around 150 to several thousand. This created an increased need for a tool to keep track of the variables - a meta-database, she says.
In Norway, all cancer cases are reported to the Cancer Registry, where the data is quality assured and processed. Each cancer case is connected to a lot of information, and due to the personal identification system, the Cancer Registry can keep track of all cancer related information on patients for the rest of their life.
- This data is available for research, nationally and internationally, but we have not yet been able to communicate thoroughly what data we actually have, and to provide good and easily available information on each variable, explains Larønningen.
National cooperation crucial
The plan for ELVIS matured in the Cancer Registry over several years, but it was not until the end of 2015 that there was an extra incentive - and help - to start the work.
The Cancer Registry and Biobank Norway 2 jointly established a project with the purpose of making it easier to apply for data from the Cancer Registry, and link the Cancer Registry with information in bio banks. One of the main criteria for this was that the Cancer Registry established a meta-database with an application system included.
- In the start-up phase, Biobank Norway 2 allocated NOK 2.7 million to this project - an essential initial capital for us, says Larønningen.
In addition, the development of ELVIS could benefit from national cooperation with other projects like Health Registries for Research (HRR) and the National Health Analysis Platform, hosted by the Norwegian Directorate of eHealth.
Available to everyone
ELVIS gives an overview of the variables and value sets used in the Cancer Registry. The service is available on the internet through a web browser, and is open to everyone.
ELVIS is also bilingual. Most of the information is available in both Norwegian and English, and you can easily switch between the two languages.
Anyone can go to the website and search for specific variables or see listings of variables for predefined choices such as cancer, category or clinical registry.
- You can also pick variables and create variable lists on your own, and you can download variables or value sets information. In addition, you can use ELVIS to apply for data, an also see the status and history of your own applications, says Larønningen.
ELVIS is still young
- Our ELVIS is still at the beginning of the career - and the system is not yet complete. We are now working on adding all the variables in the Cancer Registry, but some work still remains, says Larønningen.
At the time of launch, ELVIS includes information about all the core variables in the Cancer Registry, from the start in 1952 until today. In addition, the variables from the National Clinacal Registry for Prostate Cancer is available.
The variables for the national clinical registries for breast, melanoma, lung and colon and rectal cancers have been partially entered, and the other clinical registries will be added in the time to come.