The Danish National Multiple Myeloma Registry.
OBJECTIVE
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.


METHODS
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.


METHODS
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.
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.


CONCLUSIONS
The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.
Department of Hematology, Rigshospitalet, Copenhagen.
Peter
P
Gimsing
Department of Hematology, Roskilde Sygehus, Roskilde.
Morten O
MO
Holmström
Department of Hematology, Herlev Hospital, Copenhagen.
Tobias Wirenfelt
TW
Klausen
Department of Hematology, Aarhus University Hospital, Aarhus.
Niels Frost
NF
Andersen
Department of Hematology, Aalborg University Hospital, Aalborg.
Henrik
H
Gregersen
Department of Hematology, Holstebro Hospital, Holstebro.
Robert Schou
RS
Pedersen
Department of Hematology, Vejle Hospital, Vejle.
Torben
T
Plesner
Department of Hematology, Hospital of Southwestern Jutland, Esbjerg.
Per Trøllund
PT
Pedersen
Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa.
Mikael
M
Frederiksen
Department of Hematology, Roskilde Sygehus, Roskilde.
Ulf
U
Frølund
Department of Hematology, Herlev Hospital, Copenhagen.
Carsten
C
Helleberg
Department of Hematology, Rigshospitalet, Copenhagen.
Annette
A
Vangsted
Department of Hematology, Rigshospitalet, Copenhagen.
Peter
P
de Nully Brown
Department of Hematology, Odense University Hospital, Odense, Denmark.
Niels
N
Abildgaard
Multiple Myeloma Registry; overall survival; population-based; progression-free survival; treatment response