Article open access publication

The Danish National Multiple Myeloma Registry

Clinical Epidemiology, Taylor & Francis, ISSN 1179-1349

Volume Volume 8, 2016

DOI:10.2147/clep.s99463, Dimensions: pub.1045679568, PMC: PMC5094522, PMID: 27822103,

Affiliations

Organisations

  1. (1) Rigshospitalet, grid.475435.4, Capital Region
  2. (2) Roskilde Hospital, grid.416059.f, Zealand Region
  3. (3) Herlev Hospital, grid.411900.d, Capital Region
  4. (4) Aarhus University Hospital, grid.154185.c, Central Denmark Region
  5. (5) Aalborg Hospital, grid.27530.33, North Denmark Region
  6. (6) Regional Hospital Holstebro, grid.414304.6, Central Denmark Region
  7. (7) Vejle Sygehus, grid.417271.6, Southern Denmark Region
  8. (8) Hospital of South West Jutland, grid.414576.5, Southern Denmark Region
  9. (9) Hospital of Southern Jutland, grid.416811.b, Southern Denmark Region
  10. (10) Odense University Hospital, grid.7143.1, Southern Denmark Region

Countries

Denmark

Continents

Europe

Description

AIM: The Danish National Multiple Myeloma Registry (DMMR) is a population-based clinical quality database established in January 2005. The primary aim of the database is to ensure that diagnosis and treatment of plasma cell dyscrasia are of uniform quality throughout the country. Another aim is to support research. Patients are registered with their unique Danish personal identification number, and the combined use of DMMR, other Danish National registries, and the Danish National Cancer Biobank offers a unique platform for population-based translational research. STUDY POPULATION: All newly diagnosed patients with multiple myeloma (MM), smoldering MM, solitary plasmacytomas, and plasma cell leukemia in Denmark are registered annually; ~350 patients. Amyloid light-chain amyloidosis, POEMS syndrome (polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes syndrome), monoclonal gammopathy of undetermined significance and monoclonal gammopathy of undetermined significance with polyneuropathy have been registered since 2014. MAIN VARIABLES: The main registered variables at diagnosis are patient demographics, baseline disease characteristics, myeloma-defining events, clinical complications, prognostics, first- and second-line treatments, treatment responses, progression free, and overall survival. DESCRIPTIVE DATA: Up to June 2015, 2,907 newly diagnosed patients with MM, 485 patients with smoldering MM, 64 patients with plasma cell leukemia, and 191 patients with solitary plasmacytomas were registered. Registration completeness of new patients is ~100%. A data validation study performed in 2013-2014 by the Danish Myeloma Study Group showed >95% data correctness. CONCLUSION: The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.

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Aalborg University

Dimensions Citation Indicators

Times Cited: 18

Field Citation Ratio (FCR): 4.69

Relative Citation ratio (RCR): 1.21

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