Do clinical databases render population-based cancer registers obsolete? The example of breast cancer in Denmark

Objective: Clinical databases have been invented to monitor treatment outco mes, therapies or diseases, often in great detail. The traditional populati on-based cancer registry has been invented to collect a minimum of informat ion about all incident cancers. Do clinical databases render population-bas ed cancer registers obsolete as sources of cancer cases for epidemiological study? Methods: We compared the study base of first incident breast cancer cases i n Denmark in 1978-1994 known from the national cancer register and from the national clinical database on breast cancer patients. The clinical databas e is used for monitoring protocoled treatment. Results: Combining the two data sources we found 48,522 first primary breas t cancers in Denmark 1978-1994. Of these, 37,640 were included in both data sources, 2151 were included only in the clinical database, and 8731 were i ncluded only in the cancer register. A major part of the difference between the two data sources was due to treatment-focused data collection in the c linical database, and a minor part due to differences in the registration o f second primaries, date of diagnosis and invasiveness. Conclusions: Cancer incidence data are sensitive to registration procedures and definitions. Clinical cancer databases cannot generally replace the tr aditional cancer register as a reliable data source for incident cancer cas es in a national population.