4.7 Article

The Global Alzheimer's Association Interactive Network

期刊

ALZHEIMERS & DEMENTIA
卷 12, 期 1, 页码 49-54

出版社

ELSEVIER SCIENCE INC
DOI: 10.1016/j.jalz.2015.06.1896

关键词

GAAIN; Data sharing; Federated data repositories; Alzheimer's disease

资金

  1. Global Alzheimer's Association Interactive Network (GAAIN) initiative of the Alzheimer's Association [003278]
  2. National Institutes of Health [5P41 EB015922-16, 1U54EB020406-01]

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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. (C) 2016 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.

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