Abildgaard Niels, Freilich Jonatan, Anttila Pekka, Bent-Ennakhil Nawal, Ma Yuanjun, Lassenius Mariann, Ørstavik Sigurd, Toppila Iiro, Waage Anders, Turesson Ingemar, Hansson Markus
Hematology Research Unit, Department of Hematology, Odense University Hospital, Odense, Denmark.
Department of Clinical Research, University of Southern Denmark, Odense, Denmark.
Clin Epidemiol. 2023 Sep 18;15:987-999. doi: 10.2147/CLEP.S413587. eCollection 2023.
Linked health-care registries and high coverage in Nordic countries lend themselves well to epidemiologic research. Given its relatively high incidence in Western Europe, complexity in diagnosis, and challenges in registration, multiple myeloma (MM) was selected to compare registries in Denmark, Finland, and Sweden.
Data were obtained from four archetypal registries in each country (spanning January 2005-October 2018): National Patient Registry (NPR), Prescribed Drug Registry (PDR), Cancer Registry (CR), and Cause of Death Registry. Patients newly diagnosed with MM who received MM-specific treatment were included. PDR/NPR treatment records were used to assess incident NPR cases. The registration quality of MM-specific drugs in the PDR of each country was also evaluated.
In Denmark, only 6% of patients in the NPR were not registered in the CR; in Sweden, it was 16.9%. No systematic differences were identified that could explain this discrepancy. In Denmark, lenalidomide and bortezomib were registered in the NPR with high coverage, but less expensive drugs typically given in combination with bortezomib were not covered in any of the registries. In Finland and Sweden, bortezomib records were not identified in the PDR, but some were in the NPR; other drugs had good coverage in the PDR.
The registries evaluated in this study can be used to identify the MM population; however, given the gaps in MM registration in the Finnish and Swedish CRs, Danish registries provide the most comprehensive datasets for research on treatment patterns for MM.
北欧国家相互关联的医疗保健登记系统以及高覆盖率使其非常适合进行流行病学研究。鉴于多发性骨髓瘤（MM）在西欧发病率相对较高、诊断复杂且登记存在挑战，故选择MM来比较丹麦、芬兰和瑞典的登记系统。
数据取自每个国家的四个典型登记系统（涵盖2005年1月至2018年10月）：国家患者登记系统（NPR）、处方药登记系统（PDR）、癌症登记系统（CR）和死因登记系统。纳入新诊断为MM并接受MM特异性治疗的患者。使用PDR/NPR治疗记录评估NPR中的新发病例。还评估了每个国家PDR中MM特异性药物的登记质量。
在丹麦，NPR中只有6%的患者未在CR中登记；在瑞典，这一比例为16.9%。未发现能解释这种差异的系统性差异。在丹麦，来那度胺和硼替佐米在NPR中的登记覆盖率较高，但通常与硼替佐米联合使用的较便宜药物在任何登记系统中均未涵盖。在芬兰和瑞典，PDR中未发现硼替佐米的记录，但在NPR中有一些；其他药物在PDR中的覆盖率良好。
本研究中评估的登记系统可用于识别MM患者群体；然而，鉴于芬兰和瑞典CR中MM登记存在缺口，丹麦的登记系统为MM治疗模式研究提供了最全面的数据集。
