Oertel Wolfgang H, Deuschl Guenther, Eggert Karla
Klinik für Neurologie, Abteilung Hertie-Senior Forschungsprofessur, Philipps-Universität Marburg, Baldingerstraße, 35043, Marburg, Deutschland.
Klinik für Neurologie, Christian-Albrechts-Universität Kiel, Kiel, Deutschland.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2016 Apr;59(4):420-9. doi: 10.1007/s00103-016-2312-0.
The Competence Network Parkinson (CNP) is a research infrastructure for disease-oriented translational and clinical research in the field of Parkinson syndromes (PS). It was initiated in 1999 and funded until 2008 by the German Ministry for Education and Research (BMBF). The CNP created a highly frequented website with information on PS for the general public and for experts. The CNP designed and established one of the first electronic internet-based data entry systems (secuTrial®) - fulfilling the legal standards of data safety and security - a material bank for genetic research on Parkinson's disease (PD), implemented and investigated new methods for early diagnosis of PD and related atypical PS including in vivo dopamine transporter imaging (DAT SPECT), established the German Parkinson Study Group (GPS-Pharma) with 40 certified trial centres for pharmacotherapeutical trials and the German interdisciplinary Parkinson Study Group (neurology and neurosurgery) for deep brain stimulation (GPS-DBS), and carried out several pharmacoeconomic and health care studies on PD in Germany. Sustainability of the infrastructure CNP has in part been achieved in form of the GPS-Pharma and the GPS-DBS, as well as in the German Study Group on REM Sleep Behaviour Disorder (RBD), a prodromal phase of PD. Part of the CNP activities, such as genetic research and research on cohorts of PD patients, have been incorporated into the German Center for Neurodegenerative Disorders (DZNE). Furthermore, topics such as health care research are funded within projects of the EU research program. The article describes problems in setting up a competence network from scratch and contains recommendations how to avoid them in the future.
帕金森病能力网络(CNP)是帕金森综合征(PS)领域面向疾病的转化研究和临床研究的一个研究基础设施。它于1999年启动,在2008年之前由德国教育和研究部(BMBF)资助。CNP创建了一个访问量很大的网站,为公众和专家提供有关PS的信息。CNP设计并建立了首批基于互联网的电子数据录入系统之一(secuTrial®)——符合数据安全和保障的法律标准——一个用于帕金森病(PD)基因研究的物质库,实施并研究了包括体内多巴胺转运体成像(DAT SPECT)在内的PD及相关非典型PS早期诊断的新方法,成立了拥有40个认证试验中心的德国帕金森病研究组(GPS-Pharma)用于药物治疗试验,以及用于深部脑刺激的德国跨学科帕金森病研究组(神经学和神经外科)(GPS-DBS),并在德国开展了多项关于PD的药物经济学和医疗保健研究。基础设施CNP的可持续性部分通过GPS-Pharma和GPS-DBS以及德国快速眼动睡眠行为障碍(RBD,PD的前驱期)研究组得以实现。CNP的部分活动,如基因研究和PD患者队列研究,已被纳入德国神经退行性疾病中心(DZNE)。此外,诸如医疗保健研究等主题在欧盟研究计划的项目中获得资助。本文描述了从零开始建立一个能力网络过程中出现的问题,并包含了未来如何避免这些问题的建议。