Data Management and Statistical Core

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ABSTRACT – ALLFTD – DATA MANAGEMENT AND STATISTICAL CORE The Data Management and Statistical Core supports the goals of the ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) by maintaining a secure, state-of-the art relational database for the collection of participant data, by sharing these data with ALLFTD Cores, Projects and investigators both internal and external to ALLFTD as well as various national data repositories, and by assisting with the statistical planning and analysis across ALLFTD. Using the previously constructed, 21 CFR Part 11 Compliant database the Core will use and improve upon existing and develop new automated tools for real time data entry and checking, reporting back to the Cores and Clinical Centers with data issues, and help educate on how to assure higher quality for future data entries. The Core will continue to work with and develop new tools for electronic data capture when feasible. In this way the Core will work closely with the other Cores and Clinical Centers to assure efficient and accurate data entry and capture. The Core will assist with patient tracking and recruitment and retention of study participants assist with exchange of participant samples and data within the ALLFDTD consortium and with other research groups including the National Alzheimer’s Coordinating Center (NACC), National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD), the Laboratory of Neuroimaging (LONI) and the FTD Disorders Registry (FTDDR). (ALLFTD will co- enroll eligible patients in FTDDR.) The Core will share data between the Cores and with the Projects as well as investigators internal and external to ALLFTD. The Core will provide statistical support to all Core and Projects, assisting with study design, statistical planning, analysis and interpretation of results, and work with the development and implementation of new methods when needed, like with the development of new methods for the derivation of improved normative values for the psychometric measures used in ALLFTD, and Bayesian Mixed Effects Models to obtain better estimates of whole-brain structural trajectories from longitudinal data. When reviewing data requests from ALLFTD consortium investigators the Core will review the applications not only for data matters, but also review study design and analyses plans and will offer statistical guidance when beneficial.