1. The European competence network on mastocytosis (ECNM)
- Author
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Luis Escribano, Torsten Zuberbier, Hans-Jörg Bühring, Knut Brockow, Reza Parwaresch, Michel Arock, Margarida Lima, Jürgen Grabbe, Beate M. Henz, Peter Valent, Gianni Marone, Hans-Peter Horny, Klaus Wolff, Alberto Orfao, Hanneke C. Kluin-Nelemans, Wolfgang R. Sperr, Karl Sotlar, Karin Hartmann, Massimo Triggiani, Stephan C. Bischoff, Jaap J van Doormaal, Christian Sillaber, Manuela Födinger, Laboratoire de Biologie et de Pharmacologie Appliquée (LBPA), École normale supérieure - Cachan (ENS Cachan)-Centre National de la Recherche Scientifique (CNRS), Institute of Physics, Universidade de Brasilia [Brasília] (UnB), International Center for Condensed Matter Physics Brasilia, Division of Clinical Immunology and Allergy, Università degli studi di Napoli Federico II, Bioprofiles Ltd, Faculteit Medische Wetenschappen/UMCG, Damage and Repair in Cancer Development and Cancer Treatment - 1, Stem Cell Aging Leukemia and Lymphoma, Valent, P, Arock, M, Bischoff, Sc, Bühring, Hj, Brockow, K, Escribano, L, Födinger, M, Grabbe, J, Hartmann, K, Henz, Bm, Horny, Hp, Kluin Nelemans, Hc, Lima, M, Marone, Gianni, Orfao, A, Parwaresch, Rm, Sillaber, C, Sotlar, K, Sperr, Wr, Triggiani, M, Van Doormaal, Jj, Wolff, K, and Zuberbier, T.
- Subjects
Malignant Mastocytosis ,Standardization ,Consensus Development Conferences as Topic ,International Cooperation ,mast cells ,Disease ,0302 clinical medicine ,Multicenter Studies as Topic ,MAST-CELL LEUKEMIA ,Systemic mastocytosis ,Referral and Consultation ,Randomized Controlled Trials as Topic ,mastocytosis ,MESH: Mast Cells ,General Medicine ,SYSTEMIC MASTOCYTOSIS ,Reference Standards ,competence network ,3. Good health ,Europe ,MESH: Research ,030220 oncology & carcinogenesis ,[SDV.IMM]Life Sciences [q-bio]/Immunology ,MESH: Reference Standards ,MESH: Clinical Competence ,Clinical Competence ,c-kit mutations ,medicine.medical_specialty ,MALIGNANT MASTOCYTOSIS ,MESH: Information Services ,DIAGNOSIS ,CLASSIFICATION ,03 medical and health sciences ,MESH: Referral and Consultation ,medicine ,Humans ,Medical physics ,Competence (human resources) ,Information Services ,standardization ,MESH: Humans ,criteria ,business.industry ,MESH: Consensus Development Conferences as Topic ,Network on ,Single component ,Research ,medicine.disease ,Clinical trial ,MESH: International Cooperation ,MESH: Randomized Controlled Trials as Topic ,030228 respiratory system ,Immunology ,MESH: Mastocytosis ,MESH: Multicenter Studies as Topic ,MESH: Europe ,business - Abstract
The European Competence Network on Mastocytosis (ECNM) is a Europe-wide, multinational cooperative approach attempting to improve recognition, diagnosis, and therapy of mastocytosis. The network is composed of local centers, physicians, and scientists who have dedicated their work to patients with mastocytosis. However, because of the rarity and complexity of the disease, each single component in the network alone would fail to meet important demands and to reach solid conclusions in this field of applied medicine. The ECNM represents an attempt to overcome this restriction as a cooperative multicenter platform that should serve as an important basis for the development of new therapeutic strategies and diagnostic concepts, and for the standardization of techniques used to determine diagnostic and prognostic parameters. Moreover, using future central databases and registries, a suitable infrastructure for the development of co-operative multicenter clinical trials will be established. In addition, the ECNM is dedicated to provide the best available information about the disease to patients and physicians.
- Published
- 2004