The National Alzheimer’s Coordinating Center (NACC) functions as the centralized data repository, and collaboration and communication hub for the National Institute of Aging’s (NIA’s) Alzheimer’s Disease and Research Centers (ADRC) Program, which currently includes 33 centers and 4 exploratory centers across the United States.
The National Alzheimer's Coordinating Center was established in 1999 by the National Institute on Aging/NIH to facilitate collaborative research. Using data collected from NIA-funded Alzheimer's Disease Research Centers (ADRCs) across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data. In partnership with the Alzheimer's Disease Genetics Consortium (ADGC), the National Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD), and the NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS), NACC provides a valuable resource for both exploratory and explanatory Alzheimer's disease research. NACC data are freely available to all researchers.
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NACC is located in the Department of Epidemiology at the University of Washington in Seattle and funded by NIA/NIH cooperative grant U24 AG072122.
The ADRC program
The National Institute on Aging/NIH currently funds 33 ADRCs and 4 Exploratory Centers across the United States. The Centers work to translate research advances into improved diagnosis and care and find ways to treat and possibly prevent Alzheimer's disease and related dementias. Each has its own research focus and recruitment protocol. However, the Centers are all required to involve their entire clinic enrollment in the Uniform Data Set (UDS) study and submit these data to NACC.
The Centers are organized in "cores" (Administrative; Clinical; Data Management & Statistics; Imaging; Neuropathology; Outreach, Recruitment and Engagement; and Biomarker) and "components" (Research Education Component).
Help us build a one-stop-shop for all data from the Alzheimer’s Disease Research Centers (ADRC) Program
NACC , NCRAD, and NIAGADS are eager to partner with ADRD researchers and clinicians from across the Alzheimer’s Disease Research Centers (ADRC) Program and beyond to build the “Data Front Door” (DFD), a one-stop-shop for all ADRC data. Our goal is to have this platform integrate and connect all ADRC data streams to NACC IDs and serve as an effective search, visualization, and access interface for this data. NCRAD and NIAGADS data will continue to be housed within the NCRAD and NIAGADS databases but biomarker and genetic metadata for all ADRC participants will be searchable through the DFD.
Our hope is that harmonizing these data streams and connecting them to NACC IDs will enable researchers to investigate and answer new questions in Alzheimer’s disease.
Dr. Kukull's research is focused on the neurodegenerative, vascular and other conditions causing dementia and cognitive impairment. These conditions include Alzheimer's disease, Parkinson's/Lewy body disease, frontotemporal lobar degeneration, and cerebrovascular disease. Since 1999, he has served as Director and PI of the National Alzheimer's Coordinating Center [U24 AG072122], an effort to collect and make available to researchers standardized, detailed clinical data from the approximately 37 NIA-funded Alzheimer Disease Centers across the United States. Dr. Kukull works closely with the leadership of the ADRCs and the National Institute on Aging to ensure that scientifically relevant and valid data are obtained and available from NACC’s database to any researcher anywhere.
In addition to NACC work, he is an investigator with a number of other NIH grants. He is an elected Fellow of: American College of Epidemiology, American Academy of Neurology and American Association for Advancement of Science.
Sarah Biber, PhD
Sarah Biber, PhD
Dr. Sarah Biber is the Executive Director for the National Alzheimer’s Coordinating Center (NACC), based at the University of Washington. NACC serves as the data, communication, and collaboration hub for NIA’s National Alzheimer’s Disease Research Centers (ADRC) Program, comprised of 33 centers across the United States. NACC is home to one of the largest (47,000+ participants), oldest, and most powerful AD/ADRD datasets, and is currently funded by more than $50M in NIA grants. Dr. Biber co-leads NACC’s strategic and scientific direction in collaboration with NACC’s PI and Director, Dr. Walter Kukull. Within this role, she represents NACC with national partners, spearheads national initiatives, leads academic and industry partnerships, and oversees NACC’s tech, operations, research, communications, and grants and finance teams. She has a PhD in molecular and cellular biology and extensive experience leading strategy for complex centers and programs focused on advancing research and innovation.
Prior to joining NACC in November 2021, Dr. Biber led the Surgical Innovation Program at Oregon Health and Science University (OHSU) where she shaped and significantly expanded the department of surgery’s innovation capacity and footprint, co-developed surgical innovations, led academic and industry partnerships, and founded the OHSU Invent-a-thon. She previously served as the Assistant Director for NIH’s National Center for Data to Health (CD2H), where she was instrumental in launching the center and led operations to advance informatics innovation, data sharing, software development, and collaboration across the 50+ Clinical Translational Science Awards Program Centers. Prior to CD2H, she was Entrepreneurial Program Director at the Oregon Bioscience Incubator where she helped grow the incubator three-fold and spearheaded statewide partnerships to advance entrepreneurship and startups, served on state-wide committees, and co-founded Accelerate Biotech and Digital Health PDX.
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Aileen Ida, MA
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