The data registry of the European Competence Network on Mastocytosis (ECNM): set up, projects, and perspectives

Valent, Peter and Oude Elberink, Joanna N. G. and Gorska, Aleksandra and Lange, Magdalena and Zanotti, Roberta and van Anrooij, Björn and Bonifacio, Massimiliano and Bonadonna, Patrizia and Gleixner, Karoline V. and Hadzijusufovic, Emir and Perkins, Cecelia and Hartmann, Karin and Illerhaus, Anja and Merante, Serena and Elena, Chiara and Shoumariyeh, Khalid and von Bubnoff, Nikolas and Parente, Roberta and Triggiani, Massimo and Schwaab, Juliana and Jawhar, Mohamad and Caroppo, Francesca and Fortina, Anna Belloni and Brockow, Knut and Fuchs, David and Greul, Rosemarie and Yavuz, Akif Selim and Doubek, Michael and Mattsson, Mattias and Hagglund, Hans and Panse, Jens and Sabato, Vito and Aberer, Elisabeth and Al-Ali, Haifa Kathrin and Morren, Marie-Anne and Varkonyi, Judit and Zink, Alexander and Niedoszytko, Marek and Niederwieser, Dietger and Malcovati, Luca and Reiter, Andreas and Kennedy, Vanessa and Gotlib, Jason and Lortholary, Olivier and Hermine, Olivier and Arock, Michel and Kluin-Nelemans, Hanneke and Sperr, Wolfgang R. and Study Group of the European Competence Network on Mastocytosis, . (2019) The data registry of the European Competence Network on Mastocytosis (ECNM): set up, projects, and perspectives. The Journal of Allergy and Clinical Immunology: In Practice, 7 (1). pp. 81-87.

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Official URL: https://edoc.unibas.ch/70717/

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Abstract

Mastocytosis is a unique hematologic neoplasm with complex biology and pathology and a variable clinical course. The disease can essentially be divided into cutaneous mastocytosis (CM) and systemic mastocytosis (SM). In adults, SM is diagnosed in most cases and manifests as either indolent or advanced disease. Patients with advanced SM have an unfavorable prognosis with reduced survival. However, so far, little is known about the prevalence of various categories of SM and about prognostic factors. In an attempt to learn more about the behavior and evolution of various forms of CM and SM, the European Competence Network on Mastocytosis (ECNM) initiated a mastocytosis registry in 2012. In this article, the set up and start phase of this registry are described. Until 2018, more than 3000 patients from 12 countries and 25 centers have been enrolled. In a majority of all patients, robust follow-up data and relevant clinical end points are available. Using this data set, a series of registry projects have been launched, with the aim to validate previously identified diagnostic and prognostic variables and to identify new disease-related and patient-related parameters in various forms of mastocytosis. Moreover, the core data set of the registry will be useful to establish multiparametric scoring systems through which prognostication and individualized management of patients with mastocytosis should improve in the foreseeable future.

Faculties and Departments:	03 Faculty of Medicine > Departement Biomedizin > Department of Biomedicine, University Hospital Basel > Allergy and Immunity (Hartmann)
UniBasel Contributors:	Hartmann, Karin
Item Type:	Article, refereed
Article Subtype:	Research Article
Publisher:	Elsevier
ISSN:	2213-2201
Note:	Publication type according to Uni Basel Research Database: Journal article
Related URLs:	Green Open Access
Identification Number:	doi: 10.1016/j.jaip.2018.09.024 pmid: 30416055
Last Modified:	10 Nov 2020 16:46
Deposited On:	10 Nov 2020 16:46

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