The Danish National Multiple Myeloma Registry.
The Danish National Multiple Myeloma Registry.
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DOI：
10.2147/clep.s99463
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发表时间：
2016
影响因子：
3.9
通讯作者：
Abildgaard N
中科院分区：
文献类型：
--
作者：
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
丹麦国家多发性骨髓瘤登记处（DMMR）是一个基于人群的临床质量数据库，建立于2005年1月。该数据库的主要目的是确保浆细胞病变的诊断和治疗在全国范围内具有统一的质量。另一个目的是支持研究。患者以其独特的丹麦个人识别号码进行注册，DMMR、其他丹麦国家登记处和丹麦国家癌症生物银行的联合使用为基于人群的转化研究提供了一个独特的平台。丹麦所有新诊断的多发性骨髓瘤（MM）、阴燃性MM、孤立性浆细胞瘤和浆细胞白血病患者每年都进行登记；~ 350病人。自2014年以来，淀粉样蛋白轻链淀粉样变性、POEMS综合征（多神经病变、器官肿大、内分泌病变、单克隆γ病和皮肤变化综合征）、意义不明的单克隆γ病和意义不明的单克隆γ病合并多神经病变已被登记。诊断时的主要登记变量是患者人口统计学、基线疾病特征、骨髓瘤定义事件、临床并发症、预后、一线和二线治疗、治疗反应、无进展和总生存期。截至2015年6月，共登记了2907例新诊断MM患者、485例闷烧MM患者、64例浆细胞白血病患者和191例孤立性浆细胞瘤患者。新患者登记完备性为~100%。丹麦骨髓瘤研究小组在2013-2014年进行的一项数据验证研究显示，数据正确性为95%。DMMR是一个基于人群的数据验证数据库，适用于临床、流行病学和转化研究。
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. 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. 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. The DMMR is a population-based data validated database eligible for clinical, epidemiological, and translational research.