Real World Data Group
Population based studies in real world multiple myeloma (MM) patients within the NMSG
The Real world evidence group (RWE) within the NMSG was established in September 2019 with members from Sweden, Norway, Iceland, Denmark, Finland and Estonia and Lithuania with the aim to perform epidemiological studies in patients with plasma cell disorders.
With a total population in the NMSG area of over 30 Million inhabitants with universal access to health care, including data from countries with excellent national myeloma registers, there is a great potential to study MM patients in the real world in a Nordic-Baltic collaborative effort.
By collecting population-based real-world data from national registers and myeloma patients registered in local databases in the Nordic countries, we aim to create a platform for unprecedented large cohort studies on the diagnosis, treatment and outcome in patients with plasma cell disorders in the Nordic countries.
A secondary aim is to stimulate the building of quality registers on MM patients in the Nordic countries that do not yet have these, and creating a Nordic group with expertise in multiple myeloma and epidemiology studies. The group is open to all myeloma-interested Nordic and Baltic researchers and we are especially aiming to stimulate epidemiological research by young investigators.
Perspectives
Performing and communicating population-based studies will hopefully contribute to harmonization and improvement in diagnosis, treatment and outcome in patients with multiple myeloma in the Nordic /Baltic countries. We want to stimulate the creation of population-based national quality registers in all Nordic countries and utilization of the current population-based data for the benefit of progress in myeloma care.
Current projects:
Project 1. NOR-ASCT, AUTOLOGOUS STEM CELL TREATMENT IN NORDIC MM PATIENTS (All-NMSG project). Retrospective population-based cohort study studying the utilization of high dose treatment with ASCT in MM in the Nordic/Baltic countries. Objectives: Care patterns, induction treatment, overall survival studied over time and between regions.
Project 2. TOP 75+, TREATMENT AND OUTCOME IN PATIENTS 75+ YEARS (Swedish-Danish project) Combining data from the Danish Multiple myeloma registry and the Swedish Myeloma registry, we aim to characterize treatment of elderly patients with multiple myeloma (MM) in Sweden and Denmark and, stratified by age and calendar period. We will examine differences in treatment of the elderly (75+ years) and whether these differences impact outcome in MM patients.