Autosomal dominant Alzheimer's Disease (ADAD) represents a small fraction (<1%) of all Alzheimer'sDisease cases, but it presents a unique window into the disease. Because individuals possessing knownADAD-causing mutations are destined to develop the disease at an early and relatively predictable age, theycan be studied from a presymptomatic stage and the progression of the disease can be observed. TheDominantly Inherited Alzheimer's Network (DIAN) will, for the first time, study ADAD in a systematic andcomprehensive manner, acquiring biochemical, neuroimaging, cognitive, and clinical measures from 240individuals from families with known ADAD mutations.The Informatics Core will be responsible for managing all of the data acquired within DIAN. Acentralized database - the DIAN Central Archive (DCA) - will be deployed to store the data and make itavailable to investigators in a user-friendly manner. Data will be acquired at seven performance sites anduploaded into the DIAN Central Repository (DCA). Once uploaded, the data will reside in quarantine untilhas passed several rounds of quality control checks to identify missing fields, outliers, and otherdiscrepancies. Imaging data will be distributed to dedicated quality control sites for systematic postprocessingand inspection. Once released from quarantine, the data will be made available to DIANinvestigators via a secure user-friendly web interface. The interface will allow users to locate and join dataacross all of the measures obtained in the study. We will also make available public releases of prepared,anonymized data sets. Participant privacy and overall system security will be addressed with the utmostattention in all aspects of the Core's infrastructure.The Informatics Core will maintain close interactions with each of the other cores. Regular reports willbe prepared with the Biostatistics Core and presented to the Administration Core and Steering Committee.Under the direction of the Administration and Clinical Cores, we will create a website for distributinginformation about DIAN to the research community and the general public. Data entry and sample trackingweb pages will be implemented to support the Genetics, Neuropathology, and Biomarkers cores. Supportfor the Imaging Core will include image upload/download tools, image file de-identification procedures,exchange with quality control sites, and implementation of automated processing and analysis workflows.
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