The Data Management and Statistics Core will support the other cores in the Center by (1) maintaining a center-wide system of random subject ID numbers, (2) maintaining PC- and web-based electronic data collection systems for each core to collect data, (3) processing and maintaining item-level data in a secure relational database management system, (4) storing computed summary variables in a secure relational database management system, (5) providing flexible, comprehensive, automatic and timely status reports for study coordination, and (6) designing, maintaining and tracking usage of the Center's internal and external websites. The Data Management and Statistics Core will also maintain tracking systems for (1) scheduling and prioritizing study participants and biospecimens for the Clinical, Neuropathology, and Religious Order Study Cores, (2) tracking biospecimen inventory and requests for distributions for Neuropathology and Administrative Cores, (3) tracking data requests and distributions for the Administrative Core, (4) tracking activities and outcomes for the Education and information Transfer Core, (5) tracking publications using Rush ADCC resources, and (6) scheduling and prioritization of data management and statistics activities. The Core will provide expert statistical assistance with design and analysis to Rush ADCC investigators and pilot project applicants and awardees, and more limited guidance to independently funded studies that utilize Rush ADCC data and/or specimens, especially for new investigators and investigators in training. The Core will implement a system for building data sets in the Neuropathology (NP) and Uniform Data Set (UDS) formats for transmission to NACC that will integrate with automated data auditing, inter and intra form error checks, and reports for the operational reconciliation of errors and omissions, to ensure that data are accurately shared at regular intervals and in a timely manner. The Core will support systems for providing data to support externally funded projects and secondary analyses, with an emphasis on projects funded by the National Institutes of Health, the Alzheimer's Association, and other reputable foundations. The Data Management and Statistics Core will maintain an online system for investigators inside or outside the Rush ADCC to submit requests for Rush ADCC data and biospecimens. The Core will maintain tools that extract approved datasets for distribution, and generate accompanying clear and accurate data element dictionaries.
The Data Management and Statistics Core of the Rush ADCC designs and maintains systems to support the acquisition, maintenance, distribution and analysis of high-quality data collected by the Clinical, Neuropathology, and Religious Orders Study Cores of the ADCC. These data are a resource for ongoing and future research on Alzheimer's Disease and other neurodegenerative diseases.
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