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Purpose: 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. Patients and Methods: 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. Results: 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. Conclusions: 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.

Niels Abildgaard,1,2 Jonatan Freilich,3,4 Pekka Anttila,5 Nawal Bent-Ennakhil,6 Yuanjun Ma,3 Mariann Lassenius,7 Sigurd Ørstavik,8 Iiro Toppila,7 Anders Waage,9 Ingemar Turesson,10 Markus Hansson11 1Hematology Research Unit, Department of Hematology, Odense University Hospital, Odense, Denmark; 2Department of Clinical Research, University of Southern Denmark, Odense, Denmark; 3Department of Access Consulting, PAREXEL International, Stockholm, Sweden; 4Department of Public Health and Clinical Medicine, Dermatology, Umeå University, Umeå, Sweden; 5Comprehensive Cancer Center, Department of Hematology, University of Helsinki, and Helsinki University Hospital, Helsinki, Finland; 6Takeda Pharmaceuticals International AG, Zurich, Switzerland; 7Medaffcon, Espoo, Finland; 8Takeda Pharmaceuticals International AG, Oslo, Norway; 9Department of Hematology, St Olav’s University Hospital, Trondheim, Norway; 10Lund University Cancer Centre, University of Lund, Skåne University Hospital, Lund, Sweden; 11Sahlgrenska Academy and Sahlgrenska University Hospital, Göteborg, SwedenCorrespondence: Niels Abildgaard, Department of Hematology, Odense University Hospital, Kloevervaenget 10, Floor 12, 5000 Odense C, Denmark, Tel +45 6541 1155, Email niels.abildgaard@rsyd.dkPurpose: 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.Patients and Methods: 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 re

The prevalence of multiple myeloma (MM) is increasing in the Nordic countries and the rest of the Western World. Patients aged ≥75 years at diagnosis constitute an increasing proportion of all MM patients, but are underrepresented in randomized clinical trials. There is an urgent need for studies of the characteristics, treatment and outcome in this cohort. We present data from two nationwide population-based registries of all MM patients diagnosed in Denmark January 1st 2005 until February 18th 2020, and in Sweden from January 1st 2008 until December 31st 2019, including treatment data for patients diagnosed until 2018 (Denmark) and 2019 (Sweden). In total 4647 patients were 75 years or older at diagnosis, compared to 7378 younger patients. Patients ≥75 years, comprising approximately 40% of all MM patients, are a distinct cohort with more advanced disease at diagnosis, reflected by higher ISS (International Staging System), and a higher proportion with renal failure and anemia. We find a more gradual introduction of modern medications in the older cohort than the younger, despite simultaneous changes in guidelines. Compared to the randomized controlled trials that guide the treatment of non-transplant eligible patients, we find a higher proportion of patients ≥75 years and presenting with ISS III in real world data. Nevertheless, response rates and survival are increasing, reflecting that modern treatment regimens are effective and well tolerated, also in elderly MM patients in real-world populations.

Background We wanted to evaluate if health care for multiple myeloma (MM) patients is equal in different regions of Sweden. Aim To study differences in survival for MM depending on health care region and early use of modern treatment. Methods and results Data from the Swedish Myeloma Register from patients diagnosed between 2008 and 2017 was used. Cohorts were defined by the six healthcare regions (labeled A-F) in Sweden and modern initial treatment was defined as including certain drug combinations. To adjust for time to treatment bias, survival analyses were performed also for patients alive 6 months after diagnosis. In all treated MM patients (n = 5326), we observed a superior overall survival (OS) for region A compared to all other regions (p < .01 for all respectively). After adjusting for time to treatment there was also a superior survival in the region with highest use of modern initial treatment (region A) compared to the regions defined in the study as having intermediate and low use (p < .01 for both). In patients receiving autologous stem cell transplantation (ASCT) a superior survival was observed for region A compared to all regions besides region B. Similar results were seen when adjusting for a time to treatment bias. In patients not receiving ASCT, 75 years or older and adjusted for time to treatment bias, a difference was noted only between region A and E (log rank p = .04, HR 1.2, CI 1.00-1.44, p = .06). In multivariate analyses including age, international staging system stage and time period of diagnosis, differences in survival remained for patients receiving ASCT between region A versus C, D, E and F (p = .01, p < .01, p < .01, p = .03). Conclusion We observed a superior survival in region A for patients receiving ASCT. Explanations may be higher usage of modern initial treatment or regional residual confounding. For patients not receiving ASCT, 75 years or older, differences in survival could be adjusted for., Funding Agencies|CancerfondenSwedish Cancer Society

Objective: We describe real-world evidence (RWE) from the nationwide Swedish and Danish registries that provide important information on incidence and outcome in multiple myeloma (MM). Method: First line treatment data on more than 10.000 MM patients from Denmark and Sweden between 2005–2018 are presented. Key results from research conducted within the Swedish and Danish myeloma registries are summarized, describing subgroups of patients with comorbidity, myeloma complications, and early relapse. Results: We show that national guidelines, generated on results from randomized clinical trials (RCTs) are rapidly implemented and improve overall survival (OS). We find that both the incidence of MM and the median age at diagnosis is higher in national registries compared to results from referral centres, indicating a more complete coverage. This highlights the need of validation of prognostic scoring systems and indices in e.g., SMM and high-risk MM in a real- world-population. We show that these subgroups are unlikely to be captured in RCTs with narrow inclusion and exclusion criteria, that they have worse survival, and are in need of new treatment approaches. Conclusion: National registries that include all MM patients are an important source of knowledge on epidemiology, treatment and outcome with implications for the planning of MM care. Despite the introduction of new and better treatments, rapidly implemented in our countries, our registries uncover subgroups of patients that still have inferior outcome. Our RWE can help to identify important research questions to be studied in further clinical trials also in patients currently not included in RCTs.

Objective: We describe survival in patients with oligo- and non-secretory multiple myeloma (MM). We refer to the whole group as non-measurable MM and compare it with secretory MM. Methods: Oligo-secretory MM was defined as M protein in serum <10 g/L and M protein in urine <200 measured as mg/day, mg/liter or mg/mmol creatinine. If patients had no M protein, they were defined as non-secretory. The groups were also subdivided by Free Light Chains (SFLC) level and ratio. Results: Out of 4325 patients with symptomatic MM in the Swedish Myeloma Registry during 2008-2016 eligible for the study, 389 patients (9%) had non-measurable MM. Out of these, 253 patients (6%) had oligo-secretory and 136 (3%) had non-secretory MM. Median survival for secretory MM was 42.7 months, non-measurable MM 40.2 months, oligo-secretory MM 38.6 months, and non-secretory MM 44.6 months. Difference in overall observed survival was non-significant for all groups when compared with secretory MM. Within non-secretory MM, stem cell transplantation (SCT), 95% being auto-SCT, was significant for superior survival in multivariate analysis (HR 0.048. P = .0015). Conclusion: In this population-based study, we found no difference in survival between oligo- or non-secretory MM when compared with secretory MM. SCT appears to be important also for patients with non-secretory disease.