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DATA PRESENTATION

The Danish National Acute Leukemia Registry

DATABASE

Primary variables


Bone marrow blast %

Cancer diagnosis

Cause of death

Chemotherapy

Classification of bone marrow

CPR No.

Cytogenetic examination

Diagnosis

FAB classification

First name(s)

Gender

Height

ICD10 diagnosis code

Lactate-dehydrogenase level

Metastases

No. leukocytes

Peripheral blood blast count

Relapse

Thrombycytes

Transplant

Treatment

Weight

WHO Performance Status Score

Introduction

The Danish National Acute Leukemia (ALD) is part of the haematological common database under the Danish Haematological Society. ALD gathers data on patients being treated for malignant haematological disease - lymphoma, acute leukaemia, chronic lymphatic leukaemia, chronic myeloproliferative disease and myelomatosis.

The aim of ALD is to provide an overview of epidemiological and demographic factors in acute leukaemia and myelodysplastic syndrome by individually registering all newly diagnosed acute leukaemia patients and patients with myelodysplastic syndromes.

Data is entered onto the database by haematological departments in Denmark.

More details

Abbreviation
ALD
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients diagnosed with acute myeloid leukaemia (AML), acute lymphoblastic leukaemia (ALL) and myelodysplastic syndrome (MDS). Patients are only included on the first diagnosis i.e. not recidive diagnoses
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