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DATA PRESENTATION

Danish Neuro-oncology Registry

DATABASE

Primary variables


Chemotherapy

Cognitive effect

CPR No.

Cytostatics regime

Dropout symptom

Epileptic seizure

Headache

ICD10 diagnosis code

MRI characteristics

Municipality of residence

Operation - data

Radiation data

Tumour data

Tumour localisation

Tumour size

Introduction

The Danish Neuro-oncology Registry (DNOR) is a national clinical quality database that records data on primary brain tumours in adults in Denmark . The main purpose of the database is to gather data on examination and treatment of primary cerebral tumours.

DNOR is a process-oriented production database for gliomas. The database makes it possible to document clinical activity and assess whether treatment outcomes are in line with the desired objectives.

DNOR was established in 2009 and in 2015 the National Clinical Cancer Database (DNKK) was applied to DNOR. In that connection DNORs IT-system was converted from Clinical Measurement System (KMS) to Topica.

More details

Abbreviation
DNOR
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients diagnosed with glioblastoma, primary brain tumour
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-neuro-onkologisk-gruppe
Website - data administrator
bit.ly/neuro-onkologisk-register