The Data Management and Biostatistics Core (DMBC) will provide high quality data management services and statistical consulting to FTD PPG research projects and cores. The core will build upon the work that has been accomplished in the first five years and will continue to be directed by Patrick Fox, Ph.D., Co-Director of IHA. The three overarching aims for the renewal of this program project (i.e., the separation of FTLD and related disorders from AD and normal aging;the diagnosis of FTLD-tau related versus FTLD-ubiquitin cases during life;and a better understanding of brain-behavior correlates), require the integration of a wide variety of clinical, behavioral, neuroimaging, and genetics data in order to achieve the stated aims that would give rise to better methods for differentiating FTLD, CBD, PSP and AD during life. Developing accurate methods for clinically differentiating these disorders are essential for progress in implementing effective treatment strategies. Because of the inherent complexities in accurately differentiating among a collection of disorders with overlapping symptoms and in which patients may move fluidly from one to another during their lifetime, the identification of meaningful patterns in aggregated data obtained from subjects with clinically complex presentations requires the development and implementation of valid and reliable measurement and data collection strategies. These strategies must insure that: 1) the measurement of behavioral, cognitive, neurological, imaging and genetic informationuse scientifically and clinically sound techniques that result in a consistent classification of information (e.g.;inter-rater reliability);2) that the observed phenomena are accurately recorded;3) that the recorded measurements are accurately reflected in the data base;4) that the data base is secure to avoid unauthorized changes;5) that analytical data sets are accessible to investigators;and 6) that meaningful patterns in the data are identified using appropriate statisticalmethods. The goals of the DMBC are to provide accurate data and appropriate and timely statistical support to answer the scientific questions posed in the PPG. To this end, the DMBC will: 1) maintain a centralized FTD PPG clinical and research database, ensuring the integrity, availability, and confidentiality of all core and project data;2)develop and maintain a comprehensive data quality assurance program to ensure the identification and resolution of data issues across the FTD PPG projects and cores;3) develop and maintain appropriate data management processes to ensure the integration of databases from the Cores and Projects;4) develop data reliability systems to ensure the accurate and consistent classification of observed phenomena among researchers;and 5) provide statistical consultation on research design and data analysis to all FTD PPG cores and projects.
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