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阿尔茨海默病研究中的全球数据共享

Global Data Sharing in Alzheimer Disease Research.

作者信息

Ashish Naveen, Bhatt Priya, Toga Arthur W

机构信息

Laboratory of Neuro Imaging, Institute for Neuroimaging and Informatics, University of Southern California, Los Angeles, CA.

出版信息

Alzheimer Dis Assoc Disord. 2016 Apr-Jun;30(2):160-8. doi: 10.1097/WAD.0000000000000121.

Abstract

Many investigators recognize the importance of data sharing; however, they lack the capability to share data. Research efforts could be vastly expanded if Alzheimer disease data from around the world was linked by a global infrastructure that would enable scientists to access and utilize a secure network of data with thousands of study participants at risk for or already suffering from the disease. We discuss the benefits of data sharing, impediments today, and solutions to achieving this on a global scale. We introduce the Global Alzheimer's Association Interactive Network (GAAIN), a novel approach to create a global network of Alzheimer disease data, researchers, analytical tools, and computational resources to better our understanding of this debilitating condition. GAAIN has addressed the key impediments to Alzheimer disease data sharing with its model and approach. It presents practical, promising, yet, data owner-sensitive data-sharing solutions.

摘要

许多研究人员认识到数据共享的重要性;然而,他们缺乏共享数据的能力。如果通过一个全球基础设施将来自世界各地的阿尔茨海默病数据联系起来,使科学家能够访问和利用一个安全的数据网络,该网络包含数千名有患该病风险或已患有该病的研究参与者,那么研究工作将得到极大扩展。我们讨论了数据共享的好处、当前存在的障碍以及在全球范围内实现这一目标的解决方案。我们介绍了全球阿尔茨海默病协会互动网络(GAAIN),这是一种创建阿尔茨海默病数据、研究人员、分析工具和计算资源全球网络的新颖方法,以加深我们对这种使人衰弱病症的理解。GAAIN已通过其模式和方法解决了阿尔茨海默病数据共享的关键障碍。它提出了切实可行、前景广阔且对数据所有者敏感的数据共享解决方案。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fb2d/4851599/936f16705b0b/nihms724516f1.jpg

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