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DATA PRESENTATION

The Danish Quality Database for Dementia

DATABASE

Primary variables


ACE score (Addenbrooke’s Cognitive Examination)

ADCS-ADL score

Age

Cambridge Cognitive Examination (CAMCOG) score

Cognition

Cognitive effect

CPR No.

Date of birth

Date of death

Disability Assessment for Dementia (DAD) score

Functional Assessment Questionnaire (FAQ) score

Gender

ICD10 diagnosis code

Medicine

Mini-Mental State Examination (MMSE) score

Montreal Cognitive Assessment (MoCA) score

Municipality of residence

Neuropsychological test

Patient type

The Rowland Universal Dementia Assessment Scale (RUDAS) score

Introduction

The Danish Quality Database for Dementia (DANDEM) gathers data on all Danish patients aged over 18 who have had an outpatient dementia examination in a secondary sector dementia unit. The aim of the database is to monitor and raise the quality of clinical investigations of patients referred for elective dementia examination in dementia units in the primary and secondary sectors.

Initially, only data from the secondary sector can be relied on. Currently there is no overview or checks on the quality of the dementia examination services in the primary or secondary sectors. Another factor is that this is a complex area with many different conditions that can lead to dementia and the whole field is covered in the secondary sector by three different medical specialisms - geriatrics, neurology and psychiatry.

Reporting is by data entry into the Clinical Measurement System (KMS) and cross-batching with data from the National Patient Register (LPR) and the CPR Register.

More details

Abbreviation
DANDEM
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of all patients >= 18 years-old who have had outpatient treatment in a secondary sector dementia unit
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
bit.ly/regionh-english
Data administrator
The Danish Clinical Registries (RKKP)
Contact data administrator
Thor Schmidt
T: 29 64 69 57
E: THORSC@rkkp.dk
Website - data administrator
bit.ly/dansk-klinisk-kvalitetsdatabase-demens