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.

Public Health Relevance

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.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Center Core Grants (P30)
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Special Emphasis Panel (ZAG1-ZIJ-5)
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Northwestern University at Chicago
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Alosco, Michael L; Duskin, Jonathan; Besser, Lilah M et al. (2017) Modeling the Relationships Among Late-Life Body Mass Index, Cerebrovascular Disease, and Alzheimer's Disease Neuropathology in an Autopsy Sample of 1,421 Subjects from the National Alzheimer's Coordinating Center Data Set. J Alzheimers Dis 57:953-968
Pandya, Seema Y; Lacritz, Laura H; Weiner, Myron F et al. (2017) Predictors of Reversion from Mild Cognitive Impairment to Normal Cognition. Dement Geriatr Cogn Disord 43:204-214
Jun, Gyungah R; Chung, Jaeyoon; Mez, Jesse et al. (2017) Transethnic genome-wide scan identifies novel Alzheimer's disease loci. Alzheimers Dement 13:727-738
Jutkowitz, Eric; MacLehose, Richard F; Gaugler, Joseph E et al. (2017) Risk Factors Associated With Cognitive, Functional, and Behavioral Trajectories of Newly Diagnosed Dementia Patients. J Gerontol A Biol Sci Med Sci 72:251-258
Katsumata, Yuriko; Nelson, Peter T; Ellingson, Sally R et al. (2017) Gene-based association study of genes linked to hippocampal sclerosis of aging neuropathology: GRN, TMEM106B, ABCC9, and KCNMB2. Neurobiol Aging 53:193.e17-193.e25
Yu, Xiao-Wen; Curlik, Daniel M; Oh, M Matthew et al. (2017) CREB overexpression in dorsal CA1 ameliorates long-term memory deficits in aged rats. Elife 6:
Ward, Michael E; Chen, Robert; Huang, Hsin-Yi et al. (2017) Individuals with progranulin haploinsufficiency exhibit features of neuronal ceroid lipofuscinosis. Sci Transl Med 9:
Jefferson-George, Kyra S; Wolk, David A; Lee, Edward B et al. (2017) Cognitive decline associated with pathological burden in primary age-related tauopathy. Alzheimers Dement 13:1048-1053
Morhardt, Darby J; O'Hara, Mary C; Zachrich, Kristine et al. (2017) Development of a psycho-educational support program for individuals with primary progressive aphasia and their care-partners. Dementia (London) :1471301217699675
Mackenzie, Ian R; Nicholson, Alexandra M; Sarkar, Mohona et al. (2017) TIA1 Mutations in Amyotrophic Lateral Sclerosis and Frontotemporal Dementia Promote Phase Separation and Alter Stress Granule Dynamics. Neuron 95:808-816.e9

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