Substantial uncertainty surrounds the prevalence of rare blood cancers. Estimates generated from real-world data can be influenced by database type, setting, and quality.
This present study builds on a previous DARWIN EU® study (EUPAS50800), which estimated the prevalence of rare blood cancers using data from five sources in Europe, primarily reflecting primary care settings.
Across the databases included in the study, acute lymphocytic leukaemia and acute myeloid leukaemia were the least prevalent diseases, with the highest estimates for their 5-year partial point prevalence being 0.65 and 1.03 per 10,000, respectively.
The highest estimate of prevalence of diffuse large B-Cell lymphoma was 1.73 per 10,000, while the highest prevalence of follicular lymphoma was 2.83 per 10,000.
Lastly, the highest estimates for prevalence of chronic lymphocytic leukaemia and multiple myeloma were 4.13 and 4.27 per 10,000, respectively.
Importantly, the study assessed the impact of different design choices on the obtained results, including different windows for prevalence assessment (i.e., point vs. period prevalence) and outcome duration (i.e., complete vs. partial prevalence, using 2 and 5 years to define outcome duration).
Building on the methodological work of the previous study, the current study is now repeated to incorporate additional outcomes (i.e., pancreatic cancer and soft tissue sarcoma) and data sources, including registry data and claims data.
Importantly, this study will incorporate two national cancer registries in Europe, which will require the use of external sources, such as national estimates, to derive denominators for prevalence estimation.