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DATA PRESENTATION

The Danish National Multiple Myeloma Registry

DATABASE

Primary variables


Age

Amyloidosis

Bone fracture

Bone marrow plasma

Calcium

Cause of death

CPR No.

Creatine

Cytogenetics

Date of death

Diagnosis

FISH abnormalities

Gender

Haemoglobin count

ISS stage

Karyotype

LDH count

Leukocyte count

M component

Medullary compression

Municipality of residence

Paraclinical findings

Plasma cell % in bone marrow

P-M component

Polyneuropathy

Radiological examination

Thrombocyte count

U protein

WHO Performance Status Score

Introduction

The Danish National Multiple Myeloma Registry (DaMyDa) is a clinical quality database and part of the Hematological common database. DaMyDa collects clinical data on newly diagnosed patients with myelomatosis, plasma cell leukaemia and solitary myeloma (osseous and extraosseous)

The aim of DaMyDa is to create uniform quality in diagnostics and treatment nationwide. The large scale of the database, also from an international point of view, will enable a range of epidemiological questions to be answered and show the importance of introducing new treatments.

DaMyDa was established in 2005 and gathers from all haematological departments in Denmark, supplemented with data from the National Patient Register (LPR).

More details

Abbreviation
DaMyDa
Type
Nationwide clinical quality database
Purpose
Clinical quality

Collection Period

Collection Period
Coverage
Nationwide
Population
The population consists of patients with myelomatosis, plasmacell leukaemia, solitary myeloma (osseous and extra-osseous) or monoclonal gammopathy of undetermined certain significance (MGUS)
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