THE EUTOS POPULATION BASED REGISTRY – INCIDENCES OF CML ACROSS EUROPE

ABSSUB-4188

Background: As there are only few data available about the incidence, the stage of disease at diagnosis, the treatment and the outcome of chronic myeloid leukemia (CML) in Europe the European Treatment and Outcome Study (EUTOS) for CML collected such data in 27 European countries and promotes cooperation between hematologists and scientists. 

Aims: The population-based registry was set up inside the infrastructure of the EUTOS to further explore the epidemiology, characteristics, treatment and outcomes of CML in Europe.  This work focused on the estimation of incidence of CML in Europe and the single countries participating in the registry. 

Methods: The population-based registry aimed to document all newly diagnosed adult patients with Ph⁺ and/or BCR-ABL+ CML at any stage of disease in whole countries or specified regions of Europe. The   registration period varied between 12 and 60 months in the different countries, from January 2008 to December 2012. Raw incidences were calculated for the countries and regions and adjusted to the registration period. For countries observed in whole population data from the United Nations database were used while the study groups provided the population numbers of the specified regions for countries that were observed partially.

Results: Overall  Incidences could be calculated for 20 European countries: Austria, Croatia, Cyprus, Czech Republic, Estonia, Finland, France, Germany, Italy, Latvia, Lithuania, the Netherlands, Poland, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden and the United Kingdom. 2,956 patients were registered.Estimations of raw incidences per 100,000 persons per year ranged from 0.739 in the United Kingdom to 1.964 in Finland. The overall incidence for all countries was 1.029, with 0.907 in females and 1.163 in males. Incidences rose with age group (20-29 years: 0.421, 30-39 years: 0.634, 40-50 years: 0.978, 50-60 years: 1.348, 60-70 years: 1.529, 70-80 years: 1.794, 80 years and up  1.738).

Summary/Conclusion: This is the first report of the first paneuropean prospective study of the incidence of CML in Europe. The study covers 20 countries, for a total of about 80 million adult inhabitants (³ 18 years old), over a period of one to five years. While estimation of incidences for small countries or countries that only observed small regions may be subject to large variations due to small patient numbers, the estimation of incidence over all participating regions can serve as a robust estimation for the incidence of CML in Europe. Even though we have to assume that the calculated raw incidence of 1.029 is likely to be an underestimation as it is impossible to exclude that some new cases were not registered, solid estimates of the incidence in males and females, and particularly by age, are provided. In the very young, 18 to 40 years old, the incidence is as low as 0.498, while in people more than 70 years old the incidence is as high as 1.663 . It is well known that especially older patients are underrepresented in prospective studies of treatment.

Keywords: Chronic myeloid leukemia, Incidence

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