Abstract
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.
| Originalsprog | Engelsk |
|---|---|
| Tidsskrift | Journal of Allergy and Clinical Immunology: In Practice |
| Vol/bind | 11 |
| Udgave nummer | 6 |
| Sider (fra-til) | 1706-1717 |
| ISSN | 2213-2198 |
| DOI | |
| Status | Udgivet - jun. 2023 |
Bibliografisk note
Funding Information:Conflicts of interest: P. Valent served on advisory boards and received honoraria from Novartis, Blueprint, Deciphera, Celgene, and Incyte. K. Hartmann received research funding from Thermo Fisher; and consultancy and honoraria from ALK, Allergopharma , Blueprint, Cogent, Deciphera, Leo Pharma, Menarini, Novartis , Pfizer , Sanofi , Takeda , and Thermo Fisher. P. Bonadonna received consultancy (honoraria) from Novartis and Blueprint. S. Yavuz received consultation honoraria from Cogent Biosciences. Wolfgang R. Sperr received consultancy (honoraria) from Thermofisher, AbbVie, Novartis, Pfizer, Incyte, Deciphera, Jazz, Teva, and Celgene. M. Niedoszytko received honoraria from ALK, and Novartis; and support in clinical trials from AB Science and Novartis. O. Hermine is a co-founder and stockholder of AB Science; and received research grants from AB Science, Novartis, Celgene, BMS, and Alexion. K. Sotlar served on an advisory board and received honoraria from Novartis and Blueprint. G. Hoermann received honoraria from Novartis, Incyte, Jazz Pharmceuticals, and Cogent Biosciences. S. Broesby-Olsen served as a study steering committee member for Blueprint Medicines; and receives speaker honoraria from Novartis and Thermo Fisher. R. Zanotti served on an advisory board and received honoraria from Novartis, Blueprint, and Cogent. M. Lange received honoraria from Novartis; and support in clinical trial from AB Science. M. Doubek received honoraria and research support from AbbVie, AOP Orphan, AstraZeneca, and Janssen. K. Brockow served on an advisory board and received honoraria from Blueprint, Novartis, and Thermofisher. I. Alvarez-Twose served on an advisory board and received honoraria from Novartis and Blueprint; and received research grants from Novartis and Blueprint. A. Yavuz received consultation honoraria from Cogent Biosciences. D. Radia served as clinical advisory board/study steering group member for Blueprint; a study steering committee member for Cogent; and educational events and advisory boards for Novartis. C. Grattan served as a study steering committee member for Blueprint Medicines and AB Science; and had consultancies for Celltrion and Sanofi. J. Schwaab served on advisory boards for Blueprint, Novartis, and Cogent. H. N. G. O. Elberink served on an advisory board for Blueprint; received consultancy honoraria from ALK-Abello, Novartis, and Sanofi; and served as investigator in a clinical trial for Blueprint and Cogent. F. Siebenhaar received consultancy (honoraria) from Allakos, Blueprint, CogentBio, GlaxoSmithKline (GSK), Novartis, Moxie, Sanofi, and Uriach. V. Sabato received consultancy (honoraria) from Novartis, Blueprint, Cogent, and Termofisher. A. Reiter received consultancy (honoraria) from Novartis, Blueprint, Deciphera; and research support from Novartis. A. Orfao received consultancy (honoraria) from Novartis and Blueprint. H.-P. Horny served on advisory boards and received honoraria from Novartis, Deciphera, and Blueprint Medicines. M. Triggiani received consultancy (honoraria) from Novartis, Deciphera, Blueprint, and Cogent; and served as an investigator in a clinical trial for Blueprint. M. Arock received research grants from Blueprint; and honoraria from AB science, Blueprint, and Novartis. The rest of the authors declare that they have no relevant conflicts of interest.
Funding Information:
P. Valent was supported by the Austrian Science Fund (FWF) grant P32470. K .Hartmann was supported by the Swiss National Science Foundation (SNSF) grant 310030_207705. T. Gülen was supported by the Konsul TH C Bergh Foundation and the Stockholm County Council Research Funds (ALF), Sweden. V. Sabato was supported by Flemish Research Foundation (grant. 1804523N).