title: The EUTOS population-based registry: incidence and clinical characteristics of 2904 CML patients in 20 European Countries.
abstract: This population-based registry was designed to provide robust and updated information on the characteristics and the epidemiology of chronic myeloid leukemia (CML). All cases of newly diagnosed Philadelphia positive, BCR-ABL1+ CML that occurred in a sample of 92.5 million adults living in 20 European countries, were registered over a median period of 39 months. 94.3% of the 2904 CML patients were diagnosed in chronic phase (CP). Median age was 56 years. 55.5% of patients had comorbidities, mainly cardiovascular (41.9%). High-risk patients were 24.7% by Sokal, 10.8% by EURO, and 11.8% by EUTOS risk scores. The raw incidence increased with age from 0.39/100,000/year in people 20-29 years old to 1.52 in those >70 years old, and showed a maximum of 1.39 in Italy and a minimum of 0.69 in Poland (all countries together: 0.99). The proportion of Sokal and Euro score high-risk patients seen in many countries indicates that trial patients were not a positive selection. Thus from a clinical point of view the results of most trials can be generalized to most countries. The incidences observed among European countries did not differ substantially. The estimated number of new CML cases per year in Europe is about 6370.
authors.affiliation: Institute for Medical Information Sciences, Biometry, and Epidemiology, Ludwig-Maximilians-Universitaet, Munich, Germany.
authors.forename: V S
authors.initials: VS
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authors.affiliation: Department of Hematology and Oncology L. and A., University of Bologna, Bologna, Italy.
authors.forename: M
authors.initials: M
authors.lastname: Baccarani
authors.affiliation: Institute for Medical Information Sciences, Biometry, and Epidemiology, Ludwig-Maximilians-Universitaet, Munich, Germany.
authors.forename: J
authors.initials: J
authors.lastname: Hasford
authors.affiliation: Institute for Medical Information Sciences, Biometry, and Epidemiology, Ludwig-Maximilians-Universitaet, Munich, Germany.
authors.forename: D
authors.initials: D
authors.lastname: Lindoerfer
authors.affiliation: Department of Internal Medicine IV, Haematology and Oncology, Klinikum Wells-Grieskirchen, Wells, Austria.
authors.forename: S
authors.initials: S
authors.lastname: Burgstaller
authors.affiliation: Department of Medicine, Division of Hematology, University Hospital Center, Zagreb, Croatia.
authors.forename: D
authors.initials: D
authors.lastname: Sertic
authors.affiliation: The Karaiskakio Foundation, Nicosia, Cyprus.
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authors.lastname: Costeas
authors.affiliation: Department of Internal Medicine - Hematooncology, Masaryk University Hospital, Brno, Czech Republic.
authors.forename: J
authors.initials: J
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authors.affiliation: Department of Hematology-Oncology, University Hospital, Palacky University, Olomouc, Czech Republic.
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authors.affiliation: Department of Hematology and Bone Marrow Transplantation, Tartu University Hospital, Tartu, Estonia.
authors.forename: H
authors.initials: H
authors.lastname: Everaus
authors.affiliation: Hematology Research Unit, Helsinki University Central Hospital and Hematology Research Unit, Biomedicum, Helsinki, Finland.
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authors.lastname: Koskenvesa
authors.affiliation: INSERM CIC 1402, CHU, Poitiers, France.
authors.forename: J
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authors.affiliation: Munich Cancer Registry, Ludwig-Maximilians-Universitaet, Munich, Germany.
authors.forename: G
authors.initials: G
authors.lastname: Schubert-Fritschle
authors.affiliation: Department of Specialistic, Diagnostic and Experimental Medicine, University of Bologna, Bologna, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Castagnetti
authors.affiliation: Division of Hematology, Azienda Policlinico-OVE, University of Catania, Catania, Italy.
authors.forename: F
authors.initials: F
authors.lastname: Di Raimondo
authors.affiliation: National Hematology Centre, Riga Eastern Clinical University Hospital, Riga, Latvia.
authors.forename: S
authors.initials: S
authors.lastname: Lejniece
authors.affiliation: Vilnius University Hospital, Santariskiu Klinikos, Vilnius, Lithuania.
authors.forename: L
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authors.lastname: Griskevicius
authors.affiliation: Department of Hematology, VU University Medical Center, Amsterdam, The Netherlands.
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authors.initials: N
authors.lastname: Thielen
authors.affiliation: Department of Hematology, Jagellonian University Hospital, Krakow, Poland.
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authors.initials: T
authors.lastname: Sacha
authors.affiliation: Department of Hematology and Transplantation, Medical University of Gdansk, Gdansk, Poland.
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authors.initials: A
authors.lastname: Hellmann
authors.affiliation: FSBI Hematology Research Center of Healthcare Ministry of Russian Federation, Moscow, Russia.
authors.forename: A G
authors.initials: AG
authors.lastname: Turkina
authors.affiliation: Institute of Hematology, St. Petersburg State Medical University, St. Petersburg, Russian Federation.
authors.forename: A
authors.initials: A
authors.lastname: Zaritskey
authors.affiliation: Institut za Haematologiju, Clinical Center of Serbia, University of Belgrade, Belgrade, Serbia.
authors.forename: A
authors.initials: A
authors.lastname: Bogdanovic
authors.affiliation: Department of Hematology, University Hospital, Bratislava, Slovakia.
authors.forename: Z
authors.initials: Z
authors.lastname: Sninska
authors.affiliation: Department of Hematology, University Clinical Centre, Ljubljana, Slovenia.
authors.forename: I
authors.initials: I
authors.lastname: Zupan
authors.affiliation: Hematology & Research Institute, Hospital de la Princesa, Madrid, Spain.
authors.forename: J-L
authors.initials: JL
authors.lastname: Steegmann
authors.affiliation: Department of Internal Medicine, University of Uppsala, Uppsala, Sweden.
authors.forename: B
authors.initials: B
authors.lastname: Simonsson
authors.affiliation: Institute of Translational Medicine, Royal Liverpool University Hospital, Liverpool, UK.
authors.forename: R E
authors.initials: RE
authors.lastname: Clark
authors.affiliation: Novartis Oncology Europe, Origgio, Italy.
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authors.lastname: Covelli
authors.affiliation: Novartis Oncology Europe, Origgio, Italy.
authors.forename: G
authors.initials: G
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mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D005060:Europe / Q000453:epidemiology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D015994:Incidence; D015464:Leukemia, Myelogenous, Chronic, BCR-ABL Positive / Q000453:epidemiology*; D008297:Male; D008875:Middle Aged; D011379:Prognosis; D012042:Registries / Q000706:statistics & numerical data*; D055815:Young Adult