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European Competence Network on Mastocytosis (ECNM): 10-year jubilee, update, and future perspectives

European Competence Network on Mastocytosis (ECNM): 10-Jahres Jubiläum, Erfolgsbilanz and Zukunftsperspektiven

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Summary

The European Competence Network on Mastocytosis (ECNM) was initiated in 2002 as a multidisciplinary and multinational cooperative approach to increase awareness and to improve diagnosis and therapy of mastocytosis. The network is composed of local centers, physicians, and scientists who have dedicated their work to patients with mastocytosis. A strategic goal of the ECNM is to provide the best available information about the disease to patients and physicians. During the past 10 years, the ECNM has expanded to various countries and contributed successfully to the development of markers, definitions, and standards in the field of mastocytosis. Members of the ECNM organized Annual Meetings in Europe and two Working Conferences on Mastocytosis in Vienna (in 2005 and 2010), and initiated and supported several preclinical and clinical trials. In all these activities, representatives of the ECNM cooperate closely with their US colleagues, with patient-organizations in Europe and in the USA, and with other scientific networks. The ECNM also launched a mastocytosis registry that has been activated in 2012. Using the central database of this registry, cooperative multicenter studies, which should include sufficient numbers of patients and robust evaluations, will be conducted. These studies will increase our knowledge about optimal management and therapy of patients with mastocytosis in the future.

Zusammenfassung

Das Europäische Kompetenznetzwerk für Mastozytosen (ECNM) wurde 2002 als multinationales und multidisziplinäres Konzept etabliert, mit dem Ziel das Verständnis, die Diagnostik und die Therapien in diesen Erkrankungen zu verbessern. Das Netzwerk besteht aus lokalen Zentren, Ärzt(inn)en und Wissenschafter(inne)n, welche die Mastozytosen schwerpunktmässig beforschen. Ein zentrales strategisches Ziel des ECNM ist es, wichtige aktuelle Informationen rasch an die Patienten/innen und Ärzte/innen weiterzuleiten. In den ersten 10 Jahren ist das ECNM in Europa rasch expandiert und hat maßgeblich zur Entwicklung neuer Kriterien und Standards in der Diagnostik, Betreuung und Therapie der Mastozytosen beigetragen. Vertreter des ECNM haben „Annual Meetings“ und zwei größere Arbeitskonferenzen (2005 und 2010) organisiert und mehrere präklinische und klinische Studien initiiert und unterstützt. In all diesen Aktivitäten haben ECNM Vertreter sehr eng mit ihren US Partnern kooperiert. Überdies interagiert das ECNM intensiv mit Patienten-Organisationen und mit anderen akademischen Netzwerken und Zentren. Schließlich hat das ECNM auch ein Patienten-Register etabliert, welches im Jahr 2012 aktiviert wurde. Mit Hilfe dieses Registers wird es möglich sein, neue Informationen und wichtige Daten bezüglich der Biologie, der Heterogenität und dem Verlauf der Mastozytosen zu generieren. Mit Hilfe dieser Informationen sollte es möglich werden, das Management und die Therapien der Mastozytosen in der Zukunft nachhaltig zu verbessern.

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Conflict of interest

The authors declare that there is no actual or potential conflict of interest in relation to this article.

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Authors and Affiliations

  1. Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Währinger Gürtel 18-20, 1090, Vienna, Austria

    Peter Valent MD, Karoline V. Gleixner, Emir Hadzijusufovic & Wolfgang R. Sperr

  2. LBPA CNRS UMR8113, Ecole Normale Supérieure de Cachan, Cachan, France

    Michel Arock

  3. Allergy Unit, Verona University Hospital, Verona, Italy

    Patrizia Bonadonna

  4. Department of Dermatology and Allergy Biederstein, Technical University of Munich, Munich, Germany

    Knut Brockow

  5. Department of Dermatology and Allergy Centre, Odense University Hospital, Odense, Denmark

    Sigurd Broesby-Olsen

  6. Instituto de Estudios de Mastocitosis de Castilla La Mancha, Hospital Virgen del Valle, Toledo, Spain

    Luis Escribano

  7. Norfolk and Norwich University Hospital, Norwich, UK

    Clive Grattan

  8. Hematology Center Karolinska, Karolinska University Hospital, Stockholm, Sweden

    Hans Hägglund

  9. Université Paris Descartes, Sorbonne Paris Cité, Paris, France

    Olivier Hermine

  10. Institute of Pathology, Ludwig-Maximilians-University, Munich, Germany

    Hans-Peter Horny & Karl Sotlar

  11. Department of Hematology, University Hospital Groningen, University of Groningen, Groningen, The Netherlands

    Hanneke C. Kluin-Nelemans

  12. Department of Dermatology and Allergy, Allergie-Centrum-Charité, Charité Universitätsmedizin Berlin, Berlin, Germany

    Marcus Maurer & Frank Siebenhaar

  13. Department of Allergology, Medical University of Gdańsk, Gdańsk, Poland

    Marek Niedoszytko

  14. Department of Dermatology, Medical University of Gdańsk, Gdańsk, Poland

    Boguslaw Nedoszytko

  15. Clinical Immunology and Allergy, Department of Medicine, Karolinska Institutet, Stockholm, Sweden

    Gunnar Nilsson

  16. Department of Allergology, University Medical Center of Groningen, University of Groningen, Groningen, The Netherlands

    Hanneke N. G. Oude-Elberink & Jaap J. VanDoormaal

  17. Servicio Central de Citometria, Centro de Investigacion del Cancer (IBMCC, CSIC/USAL) and Department of Medicine, University of Salamanca, Salamanca, Spain

    Alberto Orfao

  18. Department of Haematology, Guys and St Thomas NHS Foundation Trust, Guys Hospital, London, UK

    Deepti Radia

  19. III. Medizinische Klinik, Universitätsmedizin Mannheim, Universität Heidelberg, Mannheim, Germany

    Andreas Reiter

  20. Division of Allergy and Clinical Immunology, University of Naples Federico II, Naples, Italy

    Massimo Triggiani

  21. Department of Hematology, Semmelweis University, Budapest, Hungary

    Judit Várkonyi

  22. Department of Internal Medicine, Division of Hematology, University of Istanbul, Istanbul, Turkey

    Selim Yavuz

  23. Department of Dermatology, University of Cologne, Cologne, Germany

    Karin Hartmann

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  1. Peter Valent MD
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  2. Michel Arock
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Correspondence to Peter Valent MD.

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Valent, P., Arock, M., Bonadonna, P. et al. European Competence Network on Mastocytosis (ECNM): 10-year jubilee, update, and future perspectives. Wien Klin Wochenschr 124, 807–814 (2012). https://doi.org/10.1007/s00508-012-0293-z

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