Autosomal dominant Alzheimers Disease (ADAD) represents a small fraction (<1%) of all Alzheimers Disease cases, but it presents a unique window into the disease. Because individuals possessing known ADADcausing mutations are destined to develop the disease at an early and relatively predictable age, they can be studied from an asymptomatic stage and the progression of the disease can be observed. The Dominantly Inherited Alzheimers Network (DIAN) will continue its study of ADAD in a systematic and comprehensive manner, acquiring biochemical, neuroimaging, cognitive, and clinical measures from individuals from families with known ADAD mutations. The Informatics Core will be responsible for managing all of the data acquired within DIAN, except for mutation status. A centralized database the Central Neuroimaging Data Archive (CNDA) will be deployed to store and make data available to investigators in a user-friendly manner. Data will be acquired at the performance sites and uploaded into the CNDA. Once uploaded, the data will reside in quarantine until passing 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 post-processing and inspection. Once released from quarantine, the data will be made available to DIAN investigators via a data freeze produced and carefully orchestrated with the Biostatistics Core. Participant privacy and overall system security will be addressed with the utmost attention in all aspects of the Cores 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. 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. All of these procedures and systems currently are in place in DIAN and function smoothly.
DIAN is engaged in a study to better understand Alzheimers Disease, one of the great health challenges of our times. The Informatics Core provides data management, quality control, and other informatics services required for the successful conduct of the DIAN study.
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