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DATA PRESENTATION

Danish Childhood Cancer Registry

DATABASE

Primary variables


Bacterial anaemia

Cancer diagnosis

Cause of death

CPR No.

Diagnosis

Follow-up data

Metastasis localisation

Other malignant disease

Participation in international studies

Relapse

Treatment

Treatment with central venous catheter


Introduction

The Danish Childhood Cancer Registry (DBCR) is a national clinical quality database collating data on all children with carcinomas and benign CNS tumours, germ cell tumours, endocrine tumours and histiocytoses. DBCR is also based on data reported to existing clinical databases: The Childhood Cancer Database (Copenhagen University Hospital), databases from paediatric departments in Odense, Aalborg and Aarhus, the Cancer Registry and the CPR Register.

DBCR is aimed at monitoring the incidence and treatment of cancer amongst patients aged under 15. Since 1 January, 2003, the registry has registered all patients aged under 15 diagnosed with cancer since 1985. During this period more than 5000 patient pathways have been registered on the database.

More details

Abbreviation
DBCR
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of all children under 15 diagnosed with cancer - solid benign tumours and leukaemia
Database Categories

Application requirements

The Regional Clinical Quality Databases

Data about clinical quality are collected with the purpose of monitoring and raising the quality of patient treatment in the Danish health-care system. These data can, as well as all other public registers, be made accessible for research projects based on systematic protocols and approved according to the relevant legislations.

Applying for access to data from a regional clinical database requires a list of demands to be obtained. A project description should be attached containing a description of the project explaining the rationale, purpose, methods, budget, publication plan etc.

Furthermore, The Danish Data Protection Agency must approve the project.

Application process

  • Apply via research access (Danish: forskeradgang), an online application system
  • Submit the protocol to The Danish Clinical Registries (RKKP)
  • RKKP registers the application
  • The application is forwarded to the relevant clinical database
  • Potential dialog about adjustment to the protocol
  • Approval and extradition of data (expected 6 months after application)

 

Legislation

The Regional clinical quality databases subject to rules for treatment of personal data, that should secure high quality of patient treatment in Denmark. These legislations include The Act on Processing of Personal Data (Danish: Persondataloven) and The Danish Act of Health (Danish: Sundhedloven). These legislations ensure that data access is limited to relevant purposes.

Contact information

Data owner
Central Denmark Region
Contact data owner
Regionshuset Viborg
Skottenborg 26
8800 Viborg 
Website - data owner
bit.ly/rm-english
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator
Inge Bundgaard Øster
T: 21 68 76 68
E: INGOEE@rkkp.dk
Website - data administrator
bit.ly/dansk-boernecance-database