4.1 Article

Global Data Sharing in Alzheimer Disease Research

Journal

ALZHEIMER DISEASE & ASSOCIATED DISORDERS
Volume 30, Issue 2, Pages 160-168

Publisher

LIPPINCOTT WILLIAMS & WILKINS
DOI: 10.1097/WAD.0000000000000121

Keywords

Alzheimer disease data sharing; data integration; integrated data analysis

Funding

  1. Alzheimer's Association [003278-0001]
  2. Laboratory of Neuro Imaging Resource (LONIR) NIH [P41EB015922]
  3. National Institute of Biomedical Imaging and Bioengineering of the National Institutes of Health [U54EB020406]

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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.

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