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DATA PRESENTATION

Danish Register for adolecents with acqired brain injury

DATABASE

Primary variables


Addiction

Cognitive effect

Comorbidity

CPR No.

Date of birth

Diagnosis

Educational level

Effects

Ergotherapist - opinion

First name(s)

Functional Independence Measure (FIM) score

Gender

Glasgow Outcome Scale (GOS) score

High Level Mobility Assessment Tool (HiMAT)

ICD10 diagnosis code

Impaired function

Intervention

Mini-Balance Evaluation Systems Test (Mini-BESTest)

NIH Stroke scale/score (NIHSS)

Occupation

Occupation before brain injury

Rehabilitation

Rehabilitation action

Rehabilitation plan

Sick leave

Subdiagnosis

Surname

Treatment

Type of housing

Work - status

Introduction

The Danish register for adolescents with acquired brain injury (DRUE) is a clinical quality database covering information about individuals aged between 15 - 30 suspected of having acquired brain damage, understood as brain damage arising 28 days after birth or later. This may involve all levels of severity from mild functional effects to pronounced disability.

DRUE is intended to ensure that all adolescents with, or with suspected, acquired brain damage are offered neuromedical investigation of the complexity of any brain damage, and if required, referral to the highest possible quality neuro rehabilitation.

Reports are submitted to the database for the Clinical Measurement System (KMS). Other data comes from the National Patient Register (LPR), municipal information systems for rehabilitation services and the Danish Register for Evaluating Marginalisation (DREAM). Finally, questionnaire data is obtained from patients.

More details

Abbreviation
DRUE
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The database covers individuals aged between 15 - 30 suspected of having acquired brain damage, understood as brain damage arising 28 days after birth or later
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
Julie Tybjerg
T: 51 42 42 95
E: ANNTYB@rkkp.dk
Website - data administrator
www.rkkp.dk/om-rkkp/de-kliniske-kvalitetsdatabaser/dansk-register-for-unge-med-erhvervet-hjerneskade