Title (en)
European Competence Network on Mastocytosis (ECNM): 20-Year Jubilee, Updates, and Future Perspectives
Language
English
Description (en)
In 2002, the European Competence Network on Mastocytosis (ECNM) was launched as a multidisciplinary collaborative initiative to increase the awareness and to improve diagnosis and management of patients with mast cell (MC) disorders. The ECNM consists of a net of specialized centers, expert physicians, and scientists who dedicate their work to MC diseases. One essential aim of the ECNM is to timely distribute all available information about the disease to patients, doctors, and scientists. In the past 20 years, the ECNM has expanded substantially and contributed successfully to the development of new diagnostic concepts, and to the classification, prognostication, and treatments of patients with mastocytosis and MC activation disorders. The ECNM also organized annual meetings and several working conferences, thereby supporting the development of the World Health Organization classification between 2002 and 2022. In addition, the ECNM established a robust and rapidly expanding patient registry and supported the development of new prognostic scoring systems and new treatment approaches. In all projects, ECNM representatives collaborated closely with their U.S. colleagues, various patient organizations, and other scientific networks. Finally, ECNM members have started several collaborations with industrial partners, leading to the preclinical development and clinical testing of KIT-targeting drugs in systemic mastocytosis, and some of these drugs received licensing approval in recent years. All these networking activities and collaborations have strengthened the ECNM and supported our efforts to increase awareness of MC disorders and to improve diagnosis, prognostication, and therapy in patients.
Keywords (en)
Humans; Mastocytosis Diagnosis Therapy; Mastocytosis, Systemic Diagnosis; Forecasting; Mast Cells
DOI
10.1016/j.jaip.2023.02.021
Author of the digital object
Peter Valent  (Medical University of Vienna)
Michel Arock  (Sorbonne Université)
Massimo Triggiani  (University of Salerno)
Hans-Peter Horny  (Ludwig-Maximilians-Universität München)
Alberto Orfao  (Universidad de Salamanca)
Andreas Reiter  (University Hospital Mannheim)
Jiri Mayer  (University Hospital Brno / Masaryk University)
Vito Sabato  (University of Antwerp / Antwerp University Hospital)
Emir Hadzijusufovic  (University of Veterinary Medicine Vienna / Medical University of Vienna)
Frank Siebenhaar  (Charité - Universitätsmedizin Berlin / Fraunhofer Institute for Translational Medicine and Pharmacology)
Hans Hägglund  (Uppsala University Hospital)
Hanneke N. G. Oude Elberink  (University of Groningen)
Theo Gülen  (Karolinska University Hospital / Karolinska Institutet)
Juliana Schwaab  (University Hospital Mannheim)
Clive Grattan  (Guy's Hospital)
Deepti Radia  (Guy's Hospital)
Gunnar Nilsson
Selim Yavuz  (Istanbul University)
Judit Varkonyi  (Semmelweis University)
Ivan Alvarez-Twose  (Hospital Virgen del Valle)
Knut Brockow  (Technical University of Munich)
Michael Doubek  (University Hospital Brno / Masaryk University)
Magdalena Lange  (Gdańsk Medical University)
Roberta Zanotti  (University Hospital of Verona)
Sigurd Broesby-Olsen  (Odense University Hospital)
Boguslaw Nedoszytko  (Gdańsk Medical University)
Gregor Hoermann  (Medical University of Vienna / Munich Leukemia Laboratory (Germany))
Karl Sotlar  (Paracelsus Medical University)
Hanneke C. Kluin-Nelemans  (University of Groningen)
Olivier Hermine
Marek Niedoszytko  (Gdańsk Medical University)
Wolfgang R. Sperr  (Medical University of Vienna)
Karin Hartmann  (University of Basel / University Hospital of Basel)
Patrizia Bonadonna  (Verona University Hospital)
Format
application/pdf
Size
622.2 kB
Licence Selected
Type of publication
Article
Name of Publication (en)
Journal of Allergy and Clinical Immunology - In Practice
Pages or Volume
12
Volume
11
Number
6
From Page
1706
To Page
1717
Publisher
Elsevier
Publication Date
2023