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INFORMATION SEARCHING IN THE GLOBAL ALZHEIMER'S ASSOCIATION INTERACTIVE NETWORK
Source: Alzheimer's & Dementia 2016 Jul;12(7):781-782.
Author: Scott C. Neu, Scott C. Neu, Karen Crawford, Priya Bhatt, Naveen Ashish, Arthur W. Toga
Abstract:
Background Information collected by research studies on aging and Alzheimer's disease is currently stored in independently-operated repositories around the world and is not shared between them. Aggregating these data together may reveal more insights into the causes of Alzheimer's disease, improve treatments, and design preventative measures that delay the onset of physical symptoms. Methods Using data dictionaries, exam forms, and data files provided by GAAIN's data partners, the Global Alzheimer's Association Interactive Network (GAAIN, www.gaain.org) has integrated thousands of fields/questions together into a global infrastructure that provides investigators a gateway to discover subject-level data and establish new collaborations. Results GAAIN's new Scoreboard interface displays thousands of subject-level fields and questions used to collect data on over 333,000 subjects from GAAIN's 20+ data partners. Keyword searches over field names, descriptions, and values allow investigators to quickly locate data of interest. Plots of the distributions of field values show the quantities of collected data available. Investigators group fields together to determine counts of subjects having data on all selected fields. To access data, investigators download detailed descriptions of selected fields and then apply to data partners. Conclusions GAAIN provides a global infrastructure for cooperative research by linking data repositories that have collected information from thousands of subjects who are at risk for or have been diagnosed with Alzheimer's disease.
Source: Alzheimer's & Dementia 2016 Jul;12(7):781-782.
Author: Scott C. Neu, Scott C. Neu, Karen Crawford, Priya Bhatt, Naveen Ashish, Arthur W. Toga
Abstract:
Background Information collected by research studies on aging and Alzheimer's disease is currently stored in independently-operated repositories around the world and is not shared between them. Aggregating these data together may reveal more insights into the causes of Alzheimer's disease, improve treatments, and design preventative measures that delay the onset of physical symptoms. Methods Using data dictionaries, exam forms, and data files provided by GAAIN's data partners, the Global Alzheimer's Association Interactive Network (GAAIN, www.gaain.org) has integrated thousands of fields/questions together into a global infrastructure that provides investigators a gateway to discover subject-level data and establish new collaborations. Results GAAIN's new Scoreboard interface displays thousands of subject-level fields and questions used to collect data on over 333,000 subjects from GAAIN's 20+ data partners. Keyword searches over field names, descriptions, and values allow investigators to quickly locate data of interest. Plots of the distributions of field values show the quantities of collected data available. Investigators group fields together to determine counts of subjects having data on all selected fields. To access data, investigators download detailed descriptions of selected fields and then apply to data partners. Conclusions GAAIN provides a global infrastructure for cooperative research by linking data repositories that have collected information from thousands of subjects who are at risk for or have been diagnosed with Alzheimer's disease.