Autosomal dominant Alzheimer's Disease (ADAD) represents a small fraction (<1%) of all Alzheimer's Disease cases, but it presents a unique window into the disease. Because individuals possessing known ADAD-causing mutations are destined to develop the disease at an early and relatively predictable age, they can be studied from a presymptomatic stage and the progression of the disease can be observed. The Dominantly Inherited Alzheimer's Network (DIAN) will, for the first time, study ADAD in a systematic and comprehensive manner, acquiring biochemical, neuroimaging, cognitive, and clinical measures from 240 individuals from families with known ADAD mutations. The Informatics Core will be responsible for managing all of the data acquired within DIAN. A centralized database - the DIAN Central Archive (DCA) - will be deployed to store the data and make it available to investigators in a user-friendly manner. Data will be acquired at seven performance sites and uploaded into the DIAN Central Repository (DCA). Once uploaded, the data will reside in quarantine until has passed several rounds of quality control checks to identify missing fields, outliers, and other discrepancies. Imaging data will be distributed to dedicated quality control sites for systematic postprocessing and inspection. Once released from quarantine, the data will be made available to DIAN investigators via a secure user-friendly web interface. The interface will allow users to locate and join data across 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 utmost attention in all aspects of the Core's infrastructure. The Informatics Core will maintain close interactions with each of the other cores. Regular reports will be 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 distributing information about DIAN to the research community and the general public. Data entry and sample tracking web pages will be implemented to support the Genetics, Neuropathology, and Biomarkers cores. Support for 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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