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DATA PRESENTATION

Danish Lung Cancer Registry

DATABASE

Primary variables


Age

Cancer diagnosis

Charlson comorbidity index

Chemotherapy

Comorbidity

Complications

CPR No.

Diagnosis

Diagnosis

European Organisation for Research and Treatment of Cancer (EORTC) score

Functional level

Gender

Histological classification

Lung function

Oncological treatment

Operation - data

Patient-reported outcome measures

Quality of life

Radiological treatment

Stage

Symptoms

TNM classification

Tumour data

Vital status

Introduction

The Danish Lung Cancer Registry (DLCR) is a national clinical database that gathers data on patients being treated for lung cancer. The database makes it possible to document clinical activity and assess whether treatment outcomes are in line with the desired objectives. The purpose of the database is to monitor and develop the quality of interdisciplinary services provided to patients with lung cancer.

The register started accumulating data in 2000 and is based on direct data entry and cross-batched with data from the National Patient Register (LPR), the CPR Register and National Pathology Register.

More details

Abbreviation
DCLR
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients diagnosed with incidence lung cancer and tracheal cancer
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
The Region of Southern Denmark
Contact data owner
Regionshuset
Damhaven 12
7100 Vejle
Website - data owner
bit.ly/region-of-southern-denmark
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator

Monika Madsen
T: 51 15 41 58
E: MONIMS@rkkp.dk

 

Website - data administrator
bit.ly/dansk-lungecancer-register