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欧洲肥大细胞增多症网络(ECNM):十周年庆典、更新及未来展望。

European Competence Network on Mastocytosis (ECNM): 10-year jubilee, update, and future perspectives.

机构信息

Department of Internal Medicine I, Division of Hematology and Hemostaseology, Medical University of Vienna, Währinger Gürtel 18-20, 1090, Vienna, Austria.

出版信息

Wien Klin Wochenschr. 2012 Dec;124(23-24):807-14. doi: 10.1007/s00508-012-0293-z. Epub 2012 Nov 20.

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.

摘要

欧洲肥大细胞增多症专业能力网络(ECNM)成立于 2002 年,是一种多学科和跨国合作的方法,旨在提高对肥大细胞增多症的认识,并改善其诊断和治疗。该网络由专注于肥大细胞增多症患者的当地中心、医生和科学家组成。ECNM 的战略目标之一是为患者和医生提供有关该疾病的最佳可用信息。在过去的 10 年中,ECNM 已扩展到多个国家,并成功为肥大细胞增多症领域的标志物、定义和标准的发展做出了贡献。ECNM 的成员在欧洲组织了年度会议和两次维也纳肥大细胞增多症专题会议(分别于 2005 年和 2010 年),并发起和支持了多项临床前和临床试验。在所有这些活动中,ECNM 的代表与他们的美国同事、欧洲和美国的患者组织以及其他科学网络密切合作。ECNM 还推出了一个肥大细胞增多症注册中心,该中心已于 2012 年启动。利用该注册中心的中央数据库,将进行合作的多中心研究,这些研究应包括足够数量的患者和可靠的评估,以增加我们对肥大细胞增多症患者最佳管理和治疗的了解。

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