Fostering research directed toward the presymptomatic to early AD spectrum, the Oregon Alzheimer's Disease Center (OADC) supports an array of distinct investigations ranging from CSF proteomics to real-time change detection using automated in-home assessments. In this highly interactive environment, the OADC Data Management and Statistics Core (DMSC) ensures the integrity of the data coming from multiple sources and provides prompt distribution of user-friendly data as well as reliable and appropriate analyses and thoughtful consultations for a wide-range of researchers. In order to maximize the likelihood of successful accomplishment of the data processing and sharing functions of the OADC, the DMSC was established as a separate Core in our initial application funded in 1990. It has maintained Core status throughout the history of the OADC. Within the DMSC team, the Database Systems Manager together with the Data Manager maintain an extensible relational database, select and implement database management software, represent data structures, specify and organize data flow, construct detailed "error-check" programs, develop/implement data checking and cleaning procedures, and provide for data entry and access, as well as information distribution. DMSC biostatisticians are actively involved in the design and analysis of OADC studies and proposals and have established their own research areas of emphasis collaborating with all OADC Cores and investigators at other centers. All data is provided with strict confidentiality and security measures in place, adhering to all Health Insurance Portability and Accountability Act (HIPAA) and IRB regulations. With these guidelines in place, customized longitudinal data, data management and statistical consulting to research projects and cores of the OADC, as well as the National Alzheimer's Coordinating Center (NACC) and other interested investigators are provided.
The OADC Data Core provides key data management and biostatistical services to ensure high quality data and thoughtful data analysis and study design. The privacy protected and secure data is intended to be widely used and shared. The resulting research findings will lead to improvements in clinical care and public health planning, and ultimately to finding effective treatments for cognitive impairment and dementia.
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