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DATA PRESENTATION

Danish National Chronic Myeloid Neoplasia Registry

DATABASE

Primary variables


Age

Bone marrow blast %

Calcium

Cardiovascular risk factors

Cause of death

Comorbidity

CPR No.

Creatine

Date of death

Diabetes

Dizziness

Erythromelalgia

Gender

Haemoglobin count

Headache

Hypercholesterolemia

Hypertension

ICD10 diagnosis code

Increased tendency to sweat

Leukocyte count

Microvascular symptoms

MPD-related bleeds

Musculoskeletal genes that may relate to MPD

Necrosis

Paraclinical findings

Pronounce itching

Smoking

Thrombocyte count

Thrombosis

Unintended weight loss

Visual disturbances

Introduction

The Danish National Chronic Myeloid Neoplasia Registry (DMPN) is a clinical quality database and part of the Haematological Common Database. DMPN gathers data on patients treated for chronic myoloid diseases. This group of diseases covers diagnoses of essential thrombocytosis, polycythemia vera, primary myelofibrosis and chronic myeloid leukaemia. The aim of the database is to ensure quality in diagnosing and treating this patient cohort.

All haematological departments in Denmark enter data on patients with myeloproliferative disease who have or have had pysical contact with the department and the database is supplemented with data from the National Patient Register (LPR), National Pathology Register and the CPR Register.

More details

Abbreviation
DMPN
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients diagnosed with essential thrombocytosis (ET), polycytaemia vera (PV), primary myelofibrosis (PMF) and chronic myeloid leukaemia (CML)
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