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Review
. 2016 Oct 25:8:583-587.
doi: 10.2147/CLEP.S99463. eCollection 2016.

The Danish National Multiple Myeloma Registry

Peter Gimsing  1 , Morten O Holmström  2 , Tobias Wirenfelt Klausen  3 , Niels Frost Andersen  4 , Henrik Gregersen  5 , Robert Schou Pedersen  6 , Torben Plesner  7 , Per Trøllund Pedersen  8 , Mikael Frederiksen  9 , Ulf Frølund  2 , Carsten Helleberg  3 , Annette Vangsted  1 , Peter de Nully Brown  1 , Niels Abildgaard  10
Affiliations
Review

The Danish National Multiple Myeloma Registry

Peter Gimsing et al. Clin Epidemiol. .

Abstract

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.

Keywords: Multiple Myeloma Registry; overall survival; population-based; progression-free survival; treatment response.

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Conflict of interest statement

The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
Age-dependent overall survival of 2,907 newly diagnosed Danish patients with symptomatic multiple myeloma. Notes: The patients were registered in the Danish National Multiple Myeloma Registry between January 1, 2005, and June 30, 2015. Median follow-up is 59.5 months. The completeness of the registry is ~100%, and the survival curves therefore present “real life data” on multiple myeloma survival in the whole population.
See this image and copyright information in PMC

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