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DATA PRESENTATION

The Cancer Registry

DATABASE

Primary variables


Age

Anatomical localisation

Cancer diagnosis

Cancer type

CPR No.

Date of birth

Diagnosis

Gender

Municipality of residence

Spread of the disease within the first four months of diagnosis date

Introduction

The Cancer Registry (CAR) is an incidence register containing details of new cases of cancer in Denmark since and including 1943. The registry also has details about the date of diagnosis, anatomical issues, type of cancer and how the diagnosis was made. Until 2003, reports were in paper form but from 2004, the Cancer Registry switched to electronic reporting and also switched to the 'automatic cancer logic' coding system.

It should be noted that reporting to the Cancer Registry was on a voluntary basis until 1987 after which it became obligatory. The registry is updated once a year and updated data for the previous year is available in December.

More details

Abbreviation
CAR
Type
Health monotoring
Purpose
Administration

Collection Period

Collection Period
Coverage
Nationwide
Population
The population includes individuals who have been diagnosed with cancer in Denmark and Greenland
Database Categories

Application requirements

Scientific Services at The Danish Health Data Authority

Scientific Services (Danish: Forskerservice) at The Danish Health Data Authority is a Joint port of access to pseudo anonymized data that the Danish Health Data Authority are responsible for. Scientific Services works to support health research in Denmark, by providing access to, as well as advising on use of the National Danish health data.

Via Scientific Service researchers can obtain access to these data, either in a safe environment on the Research Mashine (Danish: Forskermaskinen) or by ordering data extractions that are delivered directly to the researcher.

To apply for access to data, a list of requirements must be obtained. A Project description and an extension description must be attached, containing information about which registries, variables, population and period that are applied for. Furthermore, the Danish Data Protection Agency (Danish: Datatilsynet) must approve the research project, and the approval should be attached to the application. If the research project includes direct contact with humans or human biological material, The National Committee on Health Research Ethics must also approve the project.

Application process

  • Use Scientific Services (Danish: Forskerservice) as application portal
  • Initial case processing
  • Preliminary approval of the permissions
  • Bidding
  • Acceptance of data access
  • Programming
  • Data access via the Research Machine (Danish: Forskermaskinen)

 

Legislation

As a public authority and data processor The Danish Health Data Authority are subject to Danish laws for treatment of personal data, that should secure that the Danish health data are treated right. These legislations include The Act on Processing of Personal Data (Danish: Persondataloven) and The Danish Act of Health (Danish: Sundhedloven).

Contact information

Data owner
Danish Health Data Authority
Contact data owner
Ørestads Boulevard 5
2300 København S
Website - data owner
sundhedsdatastyrelsen.dk/da
Data administrator
Danish Health Data Authority
Contact data administrator

Milan Fjaber
T: 32 68 51 43
E: mifa@sundhedsdata.dk

Website - data administrator
bit.ly/cancerregisteret