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DATA PRESENTATION

The Danish Multiple Sclerosis Treatment Register

DATABASE

Primary variables


Age

Anti-Tysabri antibody count

CPR No.

Date of birth

Expanded Disability Status Scale (EDSS) score

Gender

JCV count

Medication used

MR scan

Introduction

The Danish Multiple Sclerosis Treatment Register (SCBH) is a national database which contains data relating to treatment of patients with multiple sclerosis (MS). SCBH is aimed at following the efficacy of, and improving the quality of, disease modifying treatment for patients with MS and to register the data on special drugs required by the authorities. The database is also aimed at contributing to uniform treatment principles based on national guidelines.

Multiple sclerosis affects more than 400 Danes every year and around 12,500 are living with the disease. Of these, more than 5000 are receiving treatment to modify the disease and are therefore registered in the database which has been running since 1 January 1996.

The database is based on inspection reports sent to the Clinical Measurement System (KMS).

More details

Abbreviation
SCBH
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients with disseminated sclerosis who are starting medical 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
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

Lene Korshøj
T: 29 65 666 0
E: LENKOR@rkkp.dk

Website - data administrator
bit.ly/sclerosebehandlingsregistret