全球阿尔茨海默病协会互动网络
The Global Alzheimer's Association Interactive Network.
作者信息
Toga Arthur W, Neu Scott C, Bhatt Priya, Crawford Karen L, Ashish Naveen
机构信息
Laboratory of Neuro Imaging, Institute for Neuroimaging and Informatics, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.
Laboratory of Neuro Imaging, Institute for Neuroimaging and Informatics, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.
出版信息
Alzheimers Dement. 2016 Jan;12(1):49-54. doi: 10.1016/j.jalz.2015.06.1896. Epub 2015 Aug 28.
INTRODUCTION
The Global Alzheimer's Association Interactive Network (GAAIN) is consolidating the efforts of independent Alzheimer's disease data repositories around the world with the goals of revealing more insights into the causes of Alzheimer's disease, improving treatments, and designing preventative measures that delay the onset of physical symptoms.
METHODS
We developed a system for federating these repositories that is reliant on the tenets that (1) its participants require incentives to join, (2) joining the network is not disruptive to existing repository systems, and (3) the data ownership rights of its members are protected.
RESULTS
We are currently in various phases of recruitment with over 55 data repositories in North America, Europe, Asia, and Australia and can presently query >250,000 subjects using GAAIN's search interfaces.
DISCUSSION
GAAIN's data sharing philosophy, which guided our architectural choices, is conducive to motivating membership in a voluntary data sharing network.
引言
全球阿尔茨海默病协会互动网络（GAAIN）正在整合世界各地独立的阿尔茨海默病数据存储库的工作，目标是更深入地了解阿尔茨海默病的病因、改善治疗方法，并设计出延缓身体症状出现的预防措施。
方法
我们开发了一个用于联合这些存储库的系统，该系统基于以下原则：（1）其参与者需要有加入的激励措施；（2）加入该网络不会干扰现有的存储库系统；（3）保护其成员的数据所有权。
结果
我们目前正处于不同的招募阶段，北美、欧洲、亚洲和澳大利亚有超过55个数据存储库，目前可以使用GAAIN的搜索界面查询超过250,000名受试者的数据。
讨论
GAAIN的数据共享理念指导了我们的架构选择，有利于激发在自愿数据共享网络中的成员参与度。
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