title: European Competence Network on Mastocytosis (ECNM): 10-year jubilee, update, and future perspectives.
abstract: The European Competence Network on Mastocytosis (ECNM) was initiated in 2002 as a multidisciplinary and multinational cooperative approach to increase awareness and to improve diagnosis and therapy of mastocytosis. The network is composed of local centers, physicians, and scientists who have dedicated their work to patients with mastocytosis. A strategic goal of the ECNM is to provide the best available information about the disease to patients and physicians. During the past 10 years, the ECNM has expanded to various countries and contributed successfully to the development of markers, definitions, and standards in the field of mastocytosis. Members of the ECNM organized Annual Meetings in Europe and two Working Conferences on Mastocytosis in Vienna (in 2005 and 2010), and initiated and supported several preclinical and clinical trials. In all these activities, representatives of the ECNM cooperate closely with their US colleagues, with patient-organizations in Europe and in the USA, and with other scientific networks. The ECNM also launched a mastocytosis registry that has been activated in 2012. Using the central database of this registry, cooperative multicenter studies, which should include sufficient numbers of patients and robust evaluations, will be conducted. These studies will increase our knowledge about optimal management and therapy of patients with mastocytosis in the future.
authors.affiliation: Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Währinger Gürtel 18-20, 1090, Vienna, Austria. peter.valent@meduniwien.ac.at
authors.forename: Peter
authors.initials: P
authors.lastname: Valent
authors.forename: Michel
authors.initials: M
authors.lastname: Arock
authors.forename: Patrizia
authors.initials: P
authors.lastname: Bonadonna
authors.forename: Knut
authors.initials: K
authors.lastname: Brockow
authors.forename: Sigurd
authors.initials: S
authors.lastname: Broesby-Olsen
authors.forename: Luis
authors.initials: L
authors.lastname: Escribano
authors.forename: Karoline V
authors.initials: KV
authors.lastname: Gleixner
authors.forename: Clive
authors.initials: C
authors.lastname: Grattan
authors.forename: Emir
authors.initials: E
authors.lastname: Hadzijusufovic
authors.forename: Hans
authors.initials: H
authors.lastname: Hägglund
authors.forename: Olivier
authors.initials: O
authors.lastname: Hermine
authors.forename: Hans-Peter
authors.initials: HP
authors.lastname: Horny
authors.forename: Hanneke C
authors.initials: HC
authors.lastname: Kluin-Nelemans
authors.forename: Marcus
authors.initials: M
authors.lastname: Maurer
authors.forename: Marek
authors.initials: M
authors.lastname: Niedoszytko
authors.forename: Boguslaw
authors.initials: B
authors.lastname: Nedoszytko
authors.forename: Gunnar
authors.initials: G
authors.lastname: Nilsson
authors.forename: Hanneke N G
authors.initials: HN
authors.lastname: Oude-Elberink
authors.forename: Alberto
authors.initials: A
authors.lastname: Orfao
authors.forename: Deepti
authors.initials: D
authors.lastname: Radia
authors.forename: Andreas
authors.initials: A
authors.lastname: Reiter
authors.forename: Frank
authors.initials: F
authors.lastname: Siebenhaar
authors.forename: Karl
authors.initials: K
authors.lastname: Sotlar
authors.forename: Wolfgang R
authors.initials: WR
authors.lastname: Sperr
authors.forename: Massimo
authors.initials: M
authors.lastname: Triggiani
authors.forename: Jaap J
authors.initials: JJ
authors.lastname: VanDoormaal
authors.forename: Judit
authors.initials: J
authors.lastname: Várkonyi
authors.forename: Selim
authors.initials: S
authors.lastname: Yavuz
authors.forename: Karin
authors.initials: K
authors.lastname: Hartmann
mesh_terms: D002983:Clinical Competence / Q000592:standards*; D002986:Clinical Trials as Topic; D003226:Congresses as Topic; D003299:Cooperative Behavior; D005060:Europe; D019317:Evidence-Based Medicine; D005544:Forecasting; D006801:Humans; D007255:Information Services; D033183:Interdisciplinary Communication; D007391:International Cooperation; D008407:Mast Cells / Q000473:pathology; D008415:Mastocytosis / Q000145:classification / Q000175:diagnosis* / Q000473:pathology / Q000628:therapy*; D015337:Multicenter Studies as Topic; D011785:Quality Assurance, Health Care / Q000592:standards; D012042:Registries; D012955:Societies, Medical; D057170:Translational Research, Biomedical