Original Article | Published:

Chronic Myeloproliferative Neoplasias

The EUTOS population-based registry: incidence and clinical characteristics of 2904 CML patients in 20 European Countries

Leukemia volume 29, pages 13361343 (2015) | Download Citation

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.

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Acknowledgements

For the contribution to patients registration, data collection and follow-up we kindly acknowledge: Daniela Zackova, Brno, Hana Klamova, Prague and Jan Muzik, Brno, Czech Republic; Antonio de Vivo and Riccardo Ragionieri, Bologna, and Alessandra Cupi and Antonio Spitalieri, Catania, Italy; CM Kulikow and E Yu Chelysheva, Moscow, and Elza Lomaia, St. Petersburg, Russia; M Hoglund, Uppsala, Sweden; Luis-Felipe Casado, Toledo, and Pilar Giraldo, Zaragoza, Spain; Marzena Watek and Marek Dudzinsky, Krakow, and Witold Prejzner and Monika Szarejko, Gdansk, Poland; Florence Tartarin, Poirtiers, France; Barbara Braithwhite, Liverpool, UK; Violeta Milosevic and Olivera Markovic, Belgrade, Serbia; Tadas Zvirblis, Vilnius, Lithuania; Michael Ploetscher, Wels, Austria; Ingrida Udre, Riga, Latvia; Saara Vaalas and Minna Pajuportti, Helsinki, Finland; E Laane and Mary Punab, Tartu, Estonia; F Melanthiou and C Prokopiou, Cyprus; Yi Hao and Sandra Frank, Munich, Germany. The contribution of the investigators of other regions and countries is also acknowledged: Susanne Saussele, Mannheim, Germany; Andreas Hochhaus, Jena, Germany; Dimopoulos Panayiotidis, Athens, Greece; Tamasz Masszi, Budapest, Hungary; Antonio Medina Almeida, Lisboa, Portugal; Adriana Colita, Bucharest, Romania; Iryna Dyagil, Kyiv, Ukraina. The European Treatment and Outcome Study (EUTOS) is a project supported by Novartis Oncology Europe through a contract with European LeukemiaNet and the University of Heidelberg.

Author information

Author notes

    • V S Hoffmann
    •  & M Baccarani

    These authors contributed equally to this work.

Affiliations

  1. Institute for Medical Information Sciences, Biometry, and Epidemiology, Ludwig-Maximilians-Universitaet, Munich, Germany

    • V S Hoffmann
    • , J Hasford
    •  & D Lindoerfer
  2. Department of Hematology and Oncology L. and A., University of Bologna, Bologna, Italy

    • M Baccarani
  3. Department of Internal Medicine IV, Haematology and Oncology, Klinikum Wells-Grieskirchen, Wells, Austria

    • S Burgstaller
  4. Department of Medicine, Division of Hematology, University Hospital Center, Zagreb, Croatia

    • D Sertic
  5. The Karaiskakio Foundation, Nicosia, Cyprus

    • P Costeas
  6. Department of Internal Medicine – Hematooncology, Masaryk University Hospital, Brno, Czech Republic

    • J Mayer
  7. Department of Hematology-Oncology, University Hospital, Palacky University, Olomouc, Czech Republic

    • K Indrak
  8. Department of Hematology and Bone Marrow Transplantation, Tartu University Hospital, Tartu, Estonia

    • H Everaus
  9. Hematology Research Unit, Helsinki University Central Hospital and Hematology Research Unit, Biomedicum, Helsinki, Finland

    • P Koskenvesa
  10. INSERM CIC 1402, CHU, Poitiers, France

    • J Guilhot
  11. Munich Cancer Registry, Ludwig-Maximilians-Universitaet, Munich, Germany

    • G Schubert-Fritschle
  12. Department of Specialistic, Diagnostic and Experimental Medicine, University of Bologna, Bologna, Italy

    • F Castagnetti
  13. Division of Hematology, Azienda Policlinico-OVE, University of Catania, Catania, Italy

    • F Di Raimondo
  14. National Hematology Centre, Riga Eastern Clinical University Hospital, Riga, Latvia

    • S Lejniece
  15. Vilnius University Hospital, Santariskiu Klinikos, Vilnius, Lithuania

    • L Griskevicius
  16. Department of Hematology, VU University Medical Center, Amsterdam, The Netherlands

    • N Thielen
  17. Department of Hematology, Jagellonian University Hospital, Krakow, Poland

    • T Sacha
  18. Department of Hematology and Transplantation, Medical University of Gdansk, Gdansk, Poland

    • A Hellmann
  19. FSBI Hematology Research Center of Healthcare Ministry of Russian Federation, Moscow, Russia

    • A G Turkina
  20. Institute of Hematology, St. Petersburg State Medical University, St. Petersburg, Russian Federation

    • A Zaritskey
  21. Institut za Haematologiju, Clinical Center of Serbia, University of Belgrade, Belgrade, Serbia

    • A Bogdanovic
  22. Department of Hematology, University Hospital, Bratislava, Slovakia

    • Z Sninska
  23. Department of Hematology, University Clinical Centre, Ljubljana, Slovenia

    • I Zupan
  24. Hematology & Research Institute, Hospital de la Princesa, Madrid, Spain

    • J-L Steegmann
  25. Department of Internal Medicine, University of Uppsala, Uppsala, Sweden

    • B Simonsson
  26. Institute of Translational Medicine, Royal Liverpool University Hospital, Liverpool, UK

    • R E Clark
  27. Novartis Oncology Europe, Origgio, Italy

    • A Covelli
    •  & G Guidi
  28. III. Medizinische Klinik, University of Heidelberg in Mannheim, Mannheim, Germany

    • R Hehlmann

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Competing interests

VSH, MB, JH and DL receive research funding from Novartis. NT and ZS have a consulting or advisory role at Novartis. AC and GG are employed by Novartis. KI has a consulting or advisory role at Amgen and Novartis. BS has a consulting or advisory role at BMS. AB receives funding of travel, accommodations or expenses from Novartis Oncology, Serbia. RH receives honoraria from BMS and research funding from Novartis and BMS. SB receives honoraria from Novartis, Celgene and AOP, has a consulting or advisory role at Novartis and Celgene, and receives funding of travel, accommodations or expenses from Novartis and AOP. AGT and JM have a consulting or advisory role at Novartis and BMS, and JM receives research funding and funding of travel, accommodations or expenses from Novartis and BMS. AZ has a consulting or advisory role at and participated in a speakers’ bureau for Novartis and received research funding from BMS. LG receives research funding from Novartis and Roche and funding of travel, accommodations, or expenses from Novartis, Roche and Takeda. PK has a consulting or advisory role at GSK, BMS and Novartis, receives funding from Novartis, provides expert testimony for Pfizer and Novartis, and receives funding of travel, accommodations or expenses from BMS and Ariad. FR receives honoraria from BMS and Novartis, has a consulting or advisory role at BMS and Ariad, participated in a speakers’ bureau for BMS and Novartis, and receives research funding from BMS. AH participated in a speakers’ bureau for Novartis and BMS, receives research funding and funding of travel, accommodations or expenses from Novartis and BMS, and provides expert testimony for Novartis and BMS. FC has a consulting or advisory role and receives honoraria and funding of travel, accommodations or expenses from Novartis and BMS. TS has a consulting or advisory role at, participated in a speakers’ bureau for and receives honoraria from Novartis, BMS, ADAMED and receives research funding and funding of travel, accommodations or expenses from Novartis and BMS. JLS has a consulting or advisory role at and receives honoraria and research funding from BMS, Novartis and Pfizer, and funding of travel, accommodations or expenses from BMS and Novartis. REC participated in a speakers’ bureau for Novartis, receives funding from and has a consulting or advisory role at Novartis, BMS, Pfizer and Sanofi, and receives honoraria from Novartis, BMS, Pfizer, Sanofi and TEVA. The remaining authors declare no conflict of interests.

Corresponding author

Correspondence to V S Hoffmann.

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DOI

https://doi.org/10.1038/leu.2015.73

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