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 N...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Dove Medical Press
2016-10-01
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| Series: | Clinical Epidemiology |
| Subjects: | |
| Online Access: | https://www.dovepress.com/the-danish-national-multiple-myeloma-registry-peer-reviewed-article-CLEP |
| _version_ | 1811306701205274624 |
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| author | Gimsing P Holmström MO Klausen TW Andersen NF Gregersen H Pedersen RS Plesner T Pedersen PT Frederiksen M Frølund U Helleberg C Vangsted A de Nully Brown P Abildgaard N |
| author_facet | Gimsing P Holmström MO Klausen TW Andersen NF Gregersen H Pedersen RS Plesner T Pedersen PT Frederiksen M Frølund U Helleberg C Vangsted A de Nully Brown P Abildgaard N |
| author_sort | Gimsing P |
| collection | DOAJ |
| description | 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 On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark 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, population-based, treatment response, progression-free survival, overall survival |
| first_indexed | 2024-04-13T08:50:11Z |
| format | Article |
| id | doaj.art-b1595f374813485dacfe63b1e1f1f473 |
| institution | Directory Open Access Journal |
| issn | 1179-1349 |
| language | English |
| last_indexed | 2024-04-13T08:50:11Z |
| publishDate | 2016-10-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Clinical Epidemiology |
| spelling | doaj.art-b1595f374813485dacfe63b1e1f1f4732022-12-22T02:53:31ZengDove Medical PressClinical Epidemiology1179-13492016-10-01Volume 858358729600The Danish National Multiple Myeloma RegistryGimsing PHolmström MOKlausen TWAndersen NFGregersen HPedersen RSPlesner TPedersen PTFrederiksen MFrølund UHelleberg CVangsted Ade Nully Brown PAbildgaard NPeter 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 On behalf of the Danish Myeloma Study Group 1Department of Hematology, Rigshospitalet, Copenhagen, 2Department of Hematology, Roskilde Sygehus, Roskilde, 3Department of Hematology, Herlev Hospital, Copenhagen, 4Department of Hematology, Aarhus University Hospital, Aarhus, 5Department of Hematology, Aalborg University Hospital, Aalborg, 6Department of Hematology, Holstebro Hospital, Holstebro, 7Department of Hematology, Vejle Hospital, Vejle, 8Department of Hematology, Hospital of Southwestern Jutland, Esbjerg, 9Department of Internal Medicine, Hospital of Southern Jutland, Aabenraa, 10Department of Hematology, Odense University Hospital, Odense, Denmark 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, population-based, treatment response, progression-free survival, overall survivalhttps://www.dovepress.com/the-danish-national-multiple-myeloma-registry-peer-reviewed-article-CLEPMultiple Myeloma RegistryPopulation-basedTreatment ResponseProgression free survivalOverall Survival |
| spellingShingle | Gimsing P Holmström MO Klausen TW Andersen NF Gregersen H Pedersen RS Plesner T Pedersen PT Frederiksen M Frølund U Helleberg C Vangsted A de Nully Brown P Abildgaard N The Danish National Multiple Myeloma Registry Clinical Epidemiology Multiple Myeloma Registry Population-based Treatment Response Progression free survival Overall Survival |
| title | The Danish National Multiple Myeloma Registry |
| title_full | The Danish National Multiple Myeloma Registry |
| title_fullStr | The Danish National Multiple Myeloma Registry |
| title_full_unstemmed | The Danish National Multiple Myeloma Registry |
| title_short | The Danish National Multiple Myeloma Registry |
| title_sort | danish national multiple myeloma registry |
| topic | Multiple Myeloma Registry Population-based Treatment Response Progression free survival Overall Survival |
| url | https://www.dovepress.com/the-danish-national-multiple-myeloma-registry-peer-reviewed-article-CLEP |
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