1. The European Competence Network on Mastocytosis (ECNM).
- Author
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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 G, Orfao A, Parwaresch RM, Sillaber C, Sotlar K, Sperr WR, Triggiani M, Van Doormaal JJ, Wolff K, and Zuberbier T
- Subjects
- Consensus Development Conferences as Topic, Europe, Humans, Multicenter Studies as Topic, Randomized Controlled Trials as Topic, Reference Standards, Referral and Consultation standards, Clinical Competence standards, Information Services organization & administration, International Cooperation, Mast Cells, Mastocytosis diagnosis, Mastocytosis therapy, Research
- 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
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