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The Data Registry of the European Competence Network on Mastocytosis (ECNM): Set Up, Projects, and Perspectives
P. Valent, JNG. Oude Elberink, A. Gorska, M. Lange, R. Zanotti, B. van Anrooij, M. Bonifacio, P. Bonadonna, KV. Gleixner, E. Hadzijusufovic, C. Perkins, K. Hartmann, A. Illerhaus, S. Merante, C. Elena, K. Shoumariyeh, N. von Bubnoff, R. Parente,...
Jazyk angličtina Země Spojené státy americké
Typ dokumentu časopisecké články, multicentrická studie, práce podpořená grantem, přehledy
Grantová podpora
F 4701
Austrian Science Fund FWF - Austria
F 4704
Austrian Science Fund FWF - Austria
Odkazy
PubMed
30416055
DOI
10.1016/j.jaip.2018.09.024
Knihovny.cz E-zdroje
- MeSH
- individualizovaná medicína MeSH
- informační služby * MeSH
- lidé MeSH
- mastocytóza diagnóza epidemiologie MeSH
- mezinárodní spolupráce MeSH
- prognóza MeSH
- registrace * MeSH
- riziko MeSH
- Světová zdravotnická organizace MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- multicentrická studie MeSH
- práce podpořená grantem MeSH
- přehledy MeSH
- Geografické názvy
- Evropa MeSH
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.
Allergy Unit Verona University Hospital Verona Italy
Department of Allergology Medical University of Gdansk Gdańsk Poland
Department of Dermatology and Allergy Biederstein Technische Universität München Munich Germany
Department of Dermatology and Venereology Medical University of Graz Graz Austria
Department of Dermatology University Hospitals Leuven Leuven Belgium
Department of Dermatology University of Cologne Cologne Germany
Department of Dermatology University of Luebeck Luebeck Germany
Department of Dermatology Venereology and Allergology Medical University of Gdańsk Gdańsk Poland
Department of Hematology Semmelweis University Budapest Hungary
Division of Allergy and Clinical Immunology University of Salerno Salerno Italy
Division of Hematology Department of Medical Sciences Uppsala University Uppsala Sweden
Division of Hematology Istanbul Medical School University of Istanbul Istanbul Turkey
German Cancer Consortium partner site Freiburg Freiburg Germany
Laboratory of Hematology Pitié Salpêtrière Hospital Paris France
Ludwig Boltzmann Institute for Hematology and Oncology Medical University of Vienna Vienna Austria
Pediatric Dermatology Unit Department of Medicine University of Padova Padova Italy
Section of Hematology Department of Medicine Verona University Hospital Verona Italy
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- $a Valent, Peter $u Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Vienna, Austria; Ludwig Boltzmann Institute for Hematology & Oncology, Medical University of Vienna, Vienna, Austria. Electronic address: peter.valent@meduniwien.ac.at.
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- $a The Data Registry of the European Competence Network on Mastocytosis (ECNM): Set Up, Projects, and Perspectives / $c P. Valent, JNG. Oude Elberink, A. Gorska, M. Lange, R. Zanotti, B. van Anrooij, M. Bonifacio, P. Bonadonna, KV. Gleixner, E. Hadzijusufovic, C. Perkins, K. Hartmann, A. Illerhaus, S. Merante, C. Elena, K. Shoumariyeh, N. von Bubnoff, R. Parente, M. Triggiani, J. Schwaab, M. Jawhar, F. Caroppo, AB. Fortina, K. Brockow, . David Fuchs, R. Greul, AS. Yavuz, M. Doubek, M. Mattsson, H. Hagglund, J. Panse, V. Sabato, E. Aberer, HK. Al-Ali, MA. Morren, J. Varkonyi, A. Zink, M. Niedoszytko, D. Niederwieser, L. Malcovati, A. Reiter, V. Kennedy, J. Gotlib, O. Lortholary, O. Hermine, M. Arock, H. Kluin-Nelemans, WR. Sperr, Study Group of the European Competence Network on Mastocytosis (ECNM),
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- $a 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.
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