Acute myeloid leukemia in the real world: why population-based registries are needed.

Population-based registries may provide data complementary to that from basic science and clinical intervention studies, all of which essential for establishing recommendations for the management of patients in the real world. The same quality criteria apply for the evidence-based label, and both high representation and good data quality are crucial in registry studies. Registries with high coverage of the target population reduce the impact of selection on outcome and the subsequent problem with extrapolating data to non-studied populations. Thus data, useful for clinical decision in situations not well covered by clinical studies, can be provided. The potential clinical impact of data from population-based studies is exemplified with analyses from the Swedish Acute Leukemia Registry containing over 3300 AML patients diagnosed 1997-2006 with a median follow-up of 6.2 years on (i) the role of intensive combination chemotherapy for older patients with AML, (ii) the impact of allogeneic stem cell transplantation on survival of younger patients with AML, and (iii) the continuing problem with early deaths in APL. We also present the first web-based dynamic graph showing the complex interaction between age, performance status, the proportion of patients given intensive treatment, early death rate, complete remission rate, use of allogeneic transplants and overall survival in AML (non-APL)