The Danish National Multiple Myeloma Registry
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The Danish National Multiple Myeloma Registry. / Gimsing, Peter; Holmström, Morten Orebo; Klausen, Tobias Wirenfelt; Andersen, Niels Frost; Gregersen, Henrik; Pedersen, Robert Schou; Plesner, Torben; Pedersen, Per Trøllund; Frederiksen, Mikael; Frølund, Ulf Christian; Helleberg, Carsten; Vangsted, Annette; de Nully Brown, Peter; Abildgaard, Niels.
In: Clinical Epidemiology, Vol. 8, 25.10.2016, p. 583-587.Research output: Contribution to journal › Journal article › Research › peer-review
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TY - JOUR
T1 - The Danish National Multiple Myeloma Registry
AU - Gimsing, Peter
AU - Holmström, Morten Orebo
AU - Klausen, Tobias Wirenfelt
AU - Andersen, Niels Frost
AU - Gregersen, Henrik
AU - Pedersen, Robert Schou
AU - Plesner, Torben
AU - Pedersen, Per Trøllund
AU - Frederiksen, Mikael
AU - Frølund, Ulf Christian
AU - Helleberg, Carsten
AU - Vangsted, Annette
AU - de Nully Brown, Peter
AU - Abildgaard, Niels
PY - 2016/10/25
Y1 - 2016/10/25
N2 - 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.
AB - 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.
KW - Review
KW - Journal Article
U2 - 10.2147/CLEP.S99463
DO - 10.2147/CLEP.S99463
M3 - Journal article
C2 - 27822103
VL - 8
SP - 583
EP - 587
JO - Clinical Epidemiology
JF - Clinical Epidemiology
SN - 1179-1349
ER -
ID: 174599048