11Norwegian Cancer Registry, Oslo, Norway, and the 12 HAEMACARE project leader
ABSTRACT
© F e r r a t a S t o r t i F o u n d a t i o nand far between makes comparisons of survival of patients with these diseases across regions and over time problematic. These problems are compounded by the classification difficulties mentioned above, and consequent heterogeneity of disease definitions between countries, treatment centers and cancer registries. HAEMACARE is a European project that was set up to improve the standardization and availability of population-based data on hematologic malignancies. 10 Under the aegis of this project, hematologists, pathologists and epidemiologists from several European countries reached a consensus on the grouping of myeloid malignancies (as defined by ICD-O-3 morphology codes and WHO nomenclature [1][2][3] ) into larger categories based on similarity of prognosis and, therefore, useful for epidemiological, clinical and public health purposes. The resulting HAEMACARE myeloid malignancy grouping system is analogous to that proposed by the Pathology Working Group of the International Lymphoma Epidemiology Consortium for lymphoid neoplasms. 11,12 The aim of the present study was to estimate survival of patients with myeloid malignancies alive at some point in 2000-2002, using data from European population-based cancer registries, with malignancies grouped according to the HAEMACARE system. We produced estimates of 5-year relative survival for these disease groupings, by age at diagnosis, and European region.
Design and Methods
Cases and HAEMACARE groupingsWe initially considered the 58,800 cases of myeloid malignancy diagnosed between 1995 and 2002, archived in the EURO-CARE-4 database, 13 and contributed by 48 cancer registries in 20 European countries.We grouped these countries into five European regions: Northern Europe (Iceland, Norway, Sweden), UK and Ireland (England, Northern Ireland, Scotland, Wales, Ireland), Central Europe (Austria, France, Germany, Switzerland, the Netherlands), Southern Europe (Italy, Malta, Slovenia, Spain), and Eastern Europe (Czech Republic, Poland, Slovakia). The distribution of these cases by country and cancer registry, with selected data quality indicators, is shown in Table 1.We next selected the cases to be analyzed based on cancer registry data quality.14 We included in the analyses only cancer registries with: (i) over 70% of cases microscopically verified; (ii) less than 15% of cases discovered only at autopsy or on the death certificate; and (iii) less than 30% of cases with unspecified morphology (ICD-O-3 morphology codes 9800, 9801, 9805 and 9860). This resulted in 50,328 cases from 42 cancer registries in 17 European countries. These cases are listed in Table 2 by ICD-O-3 code and WHO description, grouped into five major HAEMACARE categories: acute myeloid leukemia (AML), myeloproliferative neoplasm (MPN), myelodysplastic syndrome (MDS), myelodysplastic/myeloproliferative neoplasm (MDS/MPN), and myeloid malignancy of unknown type (leukemia N...
