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Big data, aging, and dementia: Pathways for international harmonization on data sharing
Author(s) -
Khachaturian Ara S.,
Meranus Dana H.,
Kukull Walter A.,
Khachaturian Zaven S.
Publication year - 2013
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1016/j.jalz.2013.09.001
Subject(s) - harmonization , data sharing , dementia , big data , computer science , data science , political science , psychology , world wide web , information retrieval , gerontology , medicine , data mining , alternative medicine , philosophy , pathology , disease , aesthetics
Among the impediments for the development of therapies to halt chronic diseases of aging and Alzheimer’s disease, the need to integrate scientific, population-level, and clinical information is gaining distinction. In an era of declining biomedical research resources, international public health research funders are joining together in a growing chorus emphasizing the call for “translational knowledge” that spans from “bench to bedside”. These governmental and non-governmental agencies are actively promoting and fostering international collaborations as a means to leverage resources to combat major public health problems. This is sound public health policy. The strategy is derived from awell-established tradition of international cooperation in other areas of biomedical research, mostly in infectious and other acute diseases. Yet, the application of these methods for chronic diseases such as Alzheimer’s disease requires a recalibration of tactics along three planes. The first is the recognition to build upon ongoing projects and integrate existing resources to establish an International Database for Longitudinal Studies on Aging and Dementia (IDAD) [1,2]. The second includes greater harmonization among the multitude of ongoing international collaborative research and data-sharing initiatives. The third is the formulation of standardized international data-sharing guidelines, including solutions to provide prospective and retrospective volunteer informed consent, to expand these endeavors. These shifts will enable better methods that may someday identify asymptomatic people at elevated risk for chronic brain disorders that effect cognition, motor functions, or mood [3]. There are many excellent ongoing efforts to organize multiple users, institutions and nations to support big data development, such as the National Alzheimer’s Coordinating Center, Alzheimer’s Disease Neuroimaging Initiative, European Medical Informatics Framework, Global Alzheimer Association Interactive Network, Dominantly Inherited Alzheimer Network, Alzheimer Prevention Initiative, and European Commission Joint Programming Initiative. However, the macro-level challenge of achieving seamless integration of data, information, and knowledge remains beyond the intended mission of these projects. In order to usher in the era of