The Data Management and Statistics Core (Core C) serves multiple purposes related to data acquisition, management, standardization and biostatistical analysis. It provides a centralized repository for major species of data gathered by the clinical, educational and neuropathology cores, a source of multidimensional information for all qualified investigators conducting research projects approved by the Northwestem ADC Executive Committee, and a conduit for sharing data with NACC. It provides quality control and harmonization with standardized data sets at the point of entry and biostafisfics support at the stage of study design and data retrieval.
The first aim of Core C is to maintain an integrated database for all information collected by the Northwestern ADC including demographic, clinical, imaging, biomaterial, and neuropathological data.
The second aim i s to provide biostatistical support to Northwestern ADC investigators at all stages of research including study design, data collection and analyses, and the development of new hypotheses based on existing data. The third goal of Core C is to facilitate the use of data by approved Northwestern investigators and to encourage data sharing among investigators with the goal of developing novel collaborations.
The fourth aim i s to ensure the confidentiality and security of all data by maintaining a state of the art computer system with appropriate data protection measures and also guard against loss of data by ensuring adequate backup systems are in place. Core C also takes an active role in the design of data collection instruments and in the methods of data collection in order to maintain compliance with HIPAA and other state and federal medical records regulations. The senior biostatistician is a member of the Northwestern DC Executive Committee and all research proposals reviewed by the Executive Committee have therefore received biostatistical vetting.
The final aim of Core C is to ensure successful extramural data sharing by implementation of the UDS, timely submission of the data to NACC, relay of relevant genetic and tissue data to NCRAD, electronic data transmission to ADNI, and clinical trials data submission to ADCS.
It is essential to a strong ADC to have not only a viable clinical cohort and accessible biological materials but to also have a means of making the data available to qualified researchers within and outside of the institution and to have bisotatistics support for planning and interpreting investigations. Core C serves the pivotal role of promoting intra-Center integration as well as fostering inter-Center collaborations.
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