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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,...

. 2019 ; 7 (1) : 81-87. [pub] 20181108

Jazyk angličtina Země Spojené státy americké

Typ dokumentu časopisecké články, multicentrická studie, práce podpořená grantem, přehledy

Perzistentní odkaz   https://www.medvik.cz/link/bmc20022944

Grantová podpora
F 4701 Austrian Science Fund FWF - Austria
F 4704 Austrian Science Fund FWF - Austria

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 Allergology University Medical Center Groningen University of Groningen Groningen The Netherlands

Department of Companion Animals and Horses Clinic for Internal Medicine and Infectious Diseases University of Veterinary Medicine Vienna Vienna Austria

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 Oncology and Stem Cell Transplantation Medical Center Faculty of Medicine University of Freiburg Freiburg Germany

Department of Hematology Semmelweis University Budapest Hungary

Department of Hematology University Medical Center Groningen University of Groningen Groningen The Netherlands

Department of Hematology Uppsala University Hospital and Department of Immunology Genetics and Pathology Uppsala University Uppsala Sweden

Department of Internal Medicine 1 Division of Hematology and Hemostaseology Medical University of Vienna Vienna Austria

Department of Internal Medicine 3 Hematology and Oncology Kepler University Hospital Johannes Kepler University Linz Austria

Department of Molecular Medicine and Department of Hematology Oncology University of Pavia and Fondazione IRCCS Policlinico San Matteo Pavia Italy

Department of Oncology Haematology Haemostaseology and Stem Cell Transplantation University Hospital RWTH Aachen Aachen Germany

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 Department of Medicine Stanford University School of Medicine Stanford Cancer Institute Stanford Calif

Division of Hematology Istanbul Medical School University of Istanbul Istanbul Turkey

Faculty of Medicine and Health Sciences Department of Immunology Allergology Rheumatology University of Antwerp and Antwerp University Hospital Antwerp Belgium

German Cancer Consortium partner site Freiburg Freiburg Germany

Hämatologie und Onkologie 3 Medizinische Klinik Universitätsmedizin Mannheim Universität Heidelberg Mannheim Germany

Imagine Institute INSERM U1123 Université Paris Descartes Sorbonne Paris Cité Departement of Hematology Centre national de référence des mastocytoses Hôpital Necker Assistance publique des hôpitaux de Paris Paris France

Laboratory of Hematology Pitié Salpêtrière Hospital Paris France

Ludwig Boltzmann Institute for Hematology and Oncology Medical University of Vienna Vienna Austria

Necker Pasteur Center for Infectious Diseases and Tropical Medicine and Necker Enfants malades Institut Imagine Centre National de Référence des Mastocytoses Paris Descartes University Paris France

Pediatric Dermatology Unit Department of Medicine University of Padova Padova Italy

Section of Hematology Department of Medicine Verona University Hospital Verona Italy

University Hospital Brno Brno Czech Republic

University Hospital of Leipzig Leipzig Germany

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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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