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DATA PRESENTATION

Danish Ocular Oncology Database

DATABASE

Primary variables


Cause of death

CPR No.

Familial cancer

Gender

Lymph gland status

Metastases

Metastases

Plaque type

Radiation treatment

Region

Symptoms

TNM classification

Tumour data

Tumour localisation

Tumour size

Introduction

The Danish Ocular Oncology Database covers patients with choroidal melanoma, retinoblastoma and orbital cancer. The purpose of the DOOG database is to register all cases of cancer in the region of the eyes, except for tumours that have metastasised and are growing in the region of the eyes. These tumours are registered by other specialists.

The database was established in 2011 under the Danish Ocular Oncology Group (DOOG) and is anchored in the Danish Multidisciplinary Cancer Groups. DOOG is responsible for drawing up national guidelines for treating eye tumours in Denmark. Patients with eye/orbital cancer are treated by the eye departments at Copenhagen University Hospital and Aarhus University Hospital. Patients with retinoblastoma are only treated in Aarhus.

More details

Abbreviation
DOOG
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients with chorioidal melanoma, retinoblastoma and orbital 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
Central Denmark Region
Contact data owner
Regionsgården 
Kongens vænge 2
3400 Hillerød
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-oftalmologisk-onkologi-gruppe
Website - data administrator
bit.ly/rkkp-tumorer-i-ojne