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DATA PRESENTATION

Danish Database - Chronic lymphocytic leukemia

DATABASE

Primary variables


Age

Anamnestic familial CLL

Bone marrow biopsy

Cause of death

Chemotherapy

CPR No.

Date of birth

Date of death

Fatigue

Fever

FISH abnormalities

Gender

ICD10 diagnosis code

IgVH mutations

LDH count

Lymphocyte count

Paraclinical findings

Radiological examination

Symptoms

Transplant

Weight loss

WHO Performance Status Score

Introduction

The Danish National Chronic Lymphatic Leukemia Database (CLL) is a clinical quality database and part of the Hematological Common Database. CLL contains data about chronic lymphatic leukaemia.

The aim of CLL is to ensure quality treatment and diagnosis of patients with chronic lymphatic leukaemia.

The database has been operating nationally since to 2008 and all haematological departments in Denmark report to the database, which gets additional data from the National Patient Register (LPR), National Pathology Register and the CPR Register.

More details

Abbreviation
CLL
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of all patients diagnosed with chronic lymphatic leukaemia
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
Sofia Møller Kyndesen
T: 20 35 64 26
E: SOFKYN@rkkp.dk
Website - data administrator
bit.ly/dansk-hæmatologisk-selskab
Website - data administrator
bit.ly/den-hamatologiske-fallesdatabase