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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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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DOI: https://doi.org/10.1007/s00508-012-0293-z