The Data Management and Statistics Core (henceforth abbreviated to Data Core) supports the MADRC in two areas: (1) data management; and (2) experimental design and statistical analysis. Data management specific aims are to continue to collect MADRC data from cores, the Minority Satellite and research studies and integrate this information in an existing relational multi-user research database. This database consists of a registry of patients and normal control subjects who have signed a form consenting the release of their medical records for potential participation in research studies, and have been evaluated by the Clinical Core, including information on their appropriateness for clinical studies; and research data on the subset of patients and normal control subjects who are participating in research studies, or are being followed longitudinally. The Data Core will work with projects and other cores to assure the accuracy and completeness of the data in the MADRC database using established procedures for data entry, validation and verification, modified where necessary to conform with new HTPAA guidelines for patient confidentiality. The Core will develop and extend the scope of the database to accommodate new requirements for data collection and real-time data submission from the National Alzheimer's Coordinating Center (NACC), under conditions that maintain patient confidentiality and the integrity of individual investigators' data Experimental Design and Statistical Analysis Aims of the Core are to provide leadership and assistance for MADRC-affiliated projects on all issues relating to statistical design and analysis; to provide statistical consultation for investigators in the design and analysis of research studies on dementia-related topics prior to their submission to the MADRC and funding agencies; and to provide review of statistical aspects of pilot projects and other research projects requesting use of MADRC resources.
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