The Global Alzheimer's Association Interactive Network

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• 作者：Arthur W. Toga ; ^{toga@loni.usc.edu" class="auth_mail" title="E-mail the corresponding author} ; Scott C. Neu ; Priya Bhatt ; Karen L. Crawford ; Naveen Ashish
• 关键词：GAAIN ; Data sharing ; Federated data repositories ; Alzheimer's disease
• 刊名：Alzheimer's & Dementia
• 出版年：2016
• 出版时间：January 2016
• 年：2016
• 卷：12
• 期：1
• 页码：49-54
• 全文大小：1360 K

文摘

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.