The Danish National Multiple Myeloma Registry

Abstract

AimThe 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 populationAll 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 variablesThe 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 dataUp 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.ConclusionThe DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.

Causes of early death in multiple myeloma patients treated with high‐dose therapy followed by autologous stem cell transplantation: A study based on the nationwide Danish Multiple Myeloma Registry

“…4 In contrast, three out of the 7 patients in our study received AAT beyond second line and none of our patients achieved a CR with this agent alone. Patients with steroid-refractory GVHD often do not respond to second-line therapies, and even when they do respond, they frequently experience a flare in their disease requiring subsequent therapy as was seen in our experience with AAT.…”

“…4 In comparison to their wild type counterparts, NPM1 mutant CMML patients were more likely to be anemic E614 | (50%) and high risk 4 (50%).…”

The impact of comorbidity on mortality in multiple myeloma: a Danish nationwide population‐based study

“…The Danish Multiple Myeloma Registry was established in 2005 by the Danish Myeloma Study Group (DMSG) . Danish hematology departments are obligated to report all incident cases of multiple myeloma, solitary plasmacytoma, MGUS, and plasma cell leukemia to the registry.…”

Risk factors for blood stream infections in multiple myeloma: A population‐based study of 1154 patients in Denmark

“…The quality of DMMR has recently been validated and described previously. 12,14 Treatment guidelines for newly diagnosed Danish MM patients are based on national consensus by the Danish Myeloma Study Group. 15 During the study period, trans- 16,17 Immunoparesis was defined qualitatively as having one or more of uninvolved immunoglobulins below the normal levels IgG < 6.1 g/L, IgA < 0.70 g/L, and/or IgM < 0.39 g/L at the time of diagnosis.…”