The Massachusetts ADRC established and maintains one of the oldest and most comprehensive clinical databases on AD and related dementias in the country. Its Data Management and Statistics Core was created to support the Center's mission of conducting innovative research on AD and related neurodegenerative disorders, and to sustain collaborative research efforts with other ADCs and national AD research initiatives. Its key personnel work cohesively to: Maintain the ADRC Patient Registry and Neuropathology Brain Registry to serve local ADRC and National Alzheimer's Coordinating Center (NACC) needs; Ensure a seamless transmission of clinical, laboratory and neuropathology data collected during Memory Disorders Unit (MDU) visits and autopsies to the ADRC database; Conduct accurate data entry monitored by computerized range checks and double-checking procedures; Guarantee data confidentiality in accordance with HIPAA (Health Insurance Portability and Accountability Act of 1996) and general patient privacy guidelines; Provide requested data to authorized investigators, both within the ADRC and (inter)nationally, in support of their research endeavors; Submit timely and accurate clinical and neuropathology data to the NACC; Deliver top-quality statistical consultation and execution to ADRC investigators in the various cores and affiliated research projects.
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