The Data Registry of the European Competence Network on Mastocytosis (ECNM): Set Up, Projects, and Perspectives

Publication date: Available online 8 November 2018Source: The Journal of Allergy and Clinical Immunology: In PracticeAuthor(s): Peter Valent, Joanna N.G. Oude Elberink, Aleksandra Gorska, Magdalena Lange, Roberta Zanotti, Björn van Anrooij, Massimiliano Bonifacio, Patrizia Bonadonna, Karoline V. Gleixner, Emir Hadzijusufovic, Cecelia Perkins, Karin Hartmann, Anja Illerhaus, Serena Merante, Chiara Elena, Khalid Shoumariyeh, Nikolas von Bubnoff, Roberta Parente, Massimo Triggiani, Juliana SchwaabMastocytosis 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...
Source: The Journal of Allergy and Clinical Immunology: In Practice - Category: Allergy & Immunology Source Type: research