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DATA PRESENTATION

The Danish Nephrology Registry

DATABASE

Primary variables


Age

Cause of death

Charlson comorbidity index

CPR No.

Date of death

Date of first consultation

Diagnosis

Donor data

EDTA codes in dialysis or transplant process

First name(s)

Gender

ICD10 diagnosis code

Laboratory data

Transplant

Treatment

Introduction

The Danish Nephrology Registry (DNSL) registers admission and discharge data on all patients with terminal kidney failure, pathway data for the same patient group and ERA-EDTA biochemical quality indicators. The aim of the database is to ensure and improve the clinical quality of treatment for this patient group.

DNSL has been operating as a national database for registering patients with terminal kidney failure since 1990, but it holds data going back to 1964.

All centres that transplant or treat kidney failure patients report data on clinical issues and the treatment of individual patients to DNSL. DNSL consists of a TOPICA data entry platform supplemented with quarterly extracts from the National Patient Register (LPR) and The Central Personal Registry (CPR).

More details

Abbreviation
DNSL
Type
Nationwide clinical quality database
Purpose
Clinical quality
Collection Period
1964 -
Coverage
Nationwide
Population
The population consists of Danish patients with chronic kidney failure
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 Region of Southern Denmark
Contact data owner
Regionshuset
Damhaven 12
7100 Vejle
Website - data owner
bit.ly/region-of-southern-denmark
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
bit.ly/dansk-nefrologisk-selskab
Website - data administrator
bit.ly/nefrologisk-landsregister