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• W2900345707 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. 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. Toward a Unified Database Registry in MastocytosisThe Journal of Allergy and Clinical Immunology: In PracticeVol. 7Issue 1PreviewSystemic mastocytosis is a rare disease characterized by clonal expansion of abnormal mast cells.1 With a prevalence of approximately 1 in 10,000, it is difficult for a single center to collect sufficient data about different disease variants, their clinical course, and prognostic factors. Indeed, many centers specializing in disease tend to have patient populations skewed for hematologic, allergic, or dermatologic aspects of disease. Therefore, databases involving multiple centers across multiple specialties are essential in better understanding of rare diseases such as mastocytosis. Full-Text PDF" @default.
• W2900345707 created "2018-11-16" @default.
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• W2900345707 date "2019-01-01" @default.
• W2900345707 modified "2023-10-03" @default.
• W2900345707 title "The Data Registry of the European Competence Network on Mastocytosis (ECNM): Set Up, Projects, and Perspectives" @default.
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