Saussele Susanne, Berger Ute, Aul Carlo, Büchner Thomas, Döhner Hartmut, Ehninger Gerhard, Ganser Arnold, Gökbuget Nicola, Hoelzer Dieter, Uberla Karl, Hehlmann Rüdiger
Netzwerkzentrale des Kompetenznetzes "Akute und chronische Leukämien", III. Medizinische Universitätsklinik, Klinikum Mannheim der Universität Heidelberg, Mannheim.
Med Klin (Munich). 2006 May 15;101(5):414-20. doi: 10.1007/s00063-006-1056-2.
Leukemias are a challenge and a cost factor to society because of their frequency in all age groups. They also serve as a model for a variety of diseases and possess exemplary relevance for basic research and patient care. Leukemia research and therapy have achieved high standards and even a leading position in Germany with regard to clinical trials, standardization of diagnostics and molecular studies of prognostic factors, signal transduction and gene expression. Progress is hampered, however, by fragmentation of leukemia trial groups, diagnostic approaches and treatment research activities.
A network was therefore created to integrate the leading leukemia trial groups on chronic myeloid leukemia (CML), acute myeloid leukemia (AML), acute lymphatic leukemia (ALL), myelodysplastic syndromes (MDS) and chronic myeloproliferative diseases (CMPD) and their interdisciplinary partners (diagnostics, treatment research, biometry) in cooperation with basic research and pharmaceutical industry to foster advancements in leukemiarelated research and health care through clinical trials, promotion of translational research, introduction of standards for diagnostics and therapy, and development of evidence-based guidelines.
Achievements include establishment of central information, communication and management structures, creation of an AML intergroup comprising five study groups, formation of an MDS study group and establishment of platforms for diagnostics, genomics and proteomics, and medical informatics. Exchange of scientific progress is mediated by intra- and internet, biannual newsletters, regular project group meetings, and annual network symposia.
On the basis of experience with the Competence Network "Acute and chronic leukemias" with its management, communication and information structures, the "European LeukemiaNet" (ELN) has been established within the 6th Framework Program of the European Union. The ELN integrates 78 leading leukemia trial groups (AML, ALL, CML, CLL, MDS, and CMPD), their 83 interdisciplinary partner groups (diagnostics, treatment research, registry, guidelines), industry and SMEs (small- and medium-sized enterprises) across Europe to form a cooperative network for advancements in leukemia-related research and health care.
白血病在各个年龄组中均有发生,给社会带来了挑战和经济负担。它们还可作为多种疾病的模型,对基础研究和患者护理具有典型的参考价值。在德国,白血病研究和治疗在临床试验、诊断标准化以及预后因素、信号转导和基因表达的分子研究方面已达到高标准,甚至处于领先地位。然而,白血病试验组、诊断方法和治疗研究活动的分散化阻碍了研究进展。
因此创建了一个网络,将慢性髓性白血病(CML)、急性髓性白血病(AML)、急性淋巴细胞白血病(ALL)、骨髓增生异常综合征(MDS)和慢性骨髓增殖性疾病(CMPD)的主要白血病试验组及其跨学科合作伙伴(诊断、治疗研究、生物统计学)与基础研究和制药行业整合在一起,通过临床试验、促进转化研究、引入诊断和治疗标准以及制定循证指南,推动白血病相关研究和医疗保健的进步。
成果包括建立中央信息、沟通和管理结构,创建由五个研究组组成的AML协作组,组建MDS研究组,以及建立诊断、基因组学和蛋白质组学及医学信息学平台。科学进展的交流通过内部网络和互联网、半年刊通讯、定期项目组会议以及年度网络研讨会进行。
基于“急性和慢性白血病”能力网络在管理、沟通和信息结构方面的经验,在欧盟第六框架计划内成立了“欧洲白血病网”(ELN)。ELN整合了欧洲78个主要白血病试验组(AML、ALL、CML、CLL、MDS和CMPD)、其83个跨学科合作伙伴组(诊断、治疗研究、登记、指南)、行业以及中小企业,形成一个促进白血病相关研究和医疗保健进步的合作网络。