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DATA PRESENTATION

Danish National Lymphoma Registry

DATABASE

Primary variables


Age

Anaemia

Ann Arbor stage

B symptoms

Calcium

Cause of death

Chemotherapy

CPR No.

Creatine

Date of death

Discordant lymphoma

ECOG performance status

FISH abnormalities

Gender

Haemoglobin count

ICD10 diagnosis code

LDH count

Leukocyte count

Lymph sub-types

Paraclinical findings

Radiological examination

Thrombocyte count

Treatment

Tumour data

Tumour localisation

Tumour size

WHO Performance Status Score

Introduction

The Danish National Multiple Myeloma Registry (LYFO) is a clinical quality database and part of the Hematological Common Database. LYFO contains data about patients with malignant lymphoma (lymph cancer), a disease affecting the lymph cells of the immune system (lymphocytes).

The purpose of LYFO is to register diseases and their characteristics from the time of diagnosis and to follow the course of the disease. The aim is to assure quality of diagnosis and treatment of these diseases in Denmark.

LYFO was established in 1983 as one of the first population-based lymphoma databases. The database has been national since 2000 but until 1999, it only included patients from West Denmark. All haematological departments in Denmark report to the database, with additional data from the National Patient Register (LPR), National Pathology Register and the CPR Register.

More details

Abbreviation
LYFO
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients with malignant lymphoma, including the sub-groups of non-Hodgkin's and Hodgkin's lymphoma
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