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PMID: 26961981 已发表 · ppublish ger

[The Competence Network Parkinson (CNP)].

Oertel Wolfgang H, Deuschl Guenther, Eggert Karla

摘要

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.

关键词
Competence Network Parkinson Deep brain stimulation German Parkinson Study Group Pharmacoeconomy Prodromal Parkinson’s disease
文献信息
期刊
Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz
期刊简称
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz
发表日期
0000-00-00
收录日期
2016-03-24
更新日期
2016-03-24
语言
ger
国家/地区
Germany
NLM ID
101181368
分析服务
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