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DATA PRESENTATION

Danish Rheumatologic Database

DATABASE

Primary variables


DAS28

Health Assessment Questionnaire (HAQ)

No. swollen joints

No. tender joints

Serious ADRs

VAS - global

VAS - pain

VAS -fatigue

Introduction

The Danish Rheumatology Database (DANBIO) is a nationwide clinical quality database that gathers data on patients with arthritis and being treated with biological drugs for rheumatic disease in Denmark. The aim og DANBIO is to ensure effective treatment of individual patients while the collated data is valuable in scientific studies.

DANBIO is the result of collaboration between the Danish Rheumatism Association and the Institute of Rationel Pharmacotherapy, and data is based on reports filed by personnel in the country's rheumatology departments and private clinics.

More details

Abbreviation
DANBIO
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population comprises all adult rheumatological patients being treated with biological drugs, such as tumour necrosis/ factor alpha inhibitors (TNF-alpha inhibitors). All patients with rheumatoid arthritis are also registered regardless of their treatment
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 Capital Region of Denmark
Contact data owner
Regionsgården 
Kongens vænge 2
3400 Hillerød
Website - data owner
www.regionh.dk/english/Pages/default.aspx
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator
Rune Bjerg Hansen
T: 24 34 84 68
E: ruhans@rkkp.dk
Website - data administrator
danbio-online.dk/front-page?set_language=en&cl=en
Website - data administrator
www.rkkp.dk/om-rkkp/de-kliniske-kvalitetsdatabaser/dansk-reumatologisk-database