For researchers around the world working to understand and treat Alzheimer鈥檚 and eventually find a cure, data from clinical exams of patients suffering from this complex neurodegenerative disease needs to be standardized and accessible. Since 1999, that鈥檚 what the (NACC), housed in the 91爆料 School of Public Health鈥檚 Department of Epidemiology, has been doing.
With funding from the NIH鈥檚 National Institute on Aging, the 91爆料 center began collecting data from another set of centers housed in hospitals and clinics across the country. These centers, (ADRCs), have now grown in number to 35 鈥� including the 鈥� and the data they provide, from clinical diagnosis to scanned images of brains, neuropathology and genomics, has grown as well.
Earlier this summer, the National Institute on Aging committed $35 million to continue funding the National Alzheimer鈥檚 Coordinating Center at 91爆料 through 2026.
鈥淲e have data on roughly 44,000 individuals,听and also have neuropathological exams and image data on about 6,000,鈥� said , director of the 91爆料 center and a professor of epidemiology. 鈥淲e also link to genomics data on a large proportion of the subjects. We distribute the data free worldwide to researchers, and that has led to roughly 1,400 research publications.鈥�
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The 91爆料, Kaiser Permanente, and UC San Diego will jointly听lead the next phase of an aging-brain study.听
Kukull said his team began working with NIA and clinical leaders from around the country years ago to develop a much more detailed and longitudinal standardized approach to collecting the data.
鈥淚n about 2002, we implemented a standardized collection system for neuropathologic data. Then in 2005, we worked with all the ADRCs and NIA to implement standardized clinical exam and primary data collection across all ADRCs,鈥� Kukull said. 鈥淭hat was called the . It is still in effect today and is beginning its fourth revision, to stay current with the science and clinical practice.鈥�
The NACC staff and faculty coordinate national meetings with all the centers, collect and maintain the data, help guide researchers鈥� queries through the data and even help refine hypotheses.
鈥淩equesters usually get referred to one of our consulting research experts who point them in the right direction,鈥� Kukull said. 鈥淲e help them focus what they want to do, focus the question they are researching and also focus the data they want to download, though researchers can download the entire set. We are also working to make this process much more 鈥榮elf-service鈥� and easy for researchers to see and access data.鈥�
Kukull said the new grant will help them move their vast data 鈥� including more than two decades鈥� worth of large image files and voice recordings gathered in neuropsychological testing 鈥� into the cloud. They will also continue to increase software capabilities to work with this big data, which will include the increasing involvement of machine learning.
鈥淎lzheimer鈥檚 is a complex disease with a range of impairments,鈥� Kukull said. 鈥淎lzheimer鈥檚, as a brain disease, does not occur by itself. How it interacts with, say, vascular disease, tiny strokes or Lewy body disease, Parkinson鈥檚 or other diseases in causing cognitive decline and dementia symptoms is one of the big questions everyone is struggling with.鈥�
The NACC, the ADRCs and the NIA are focused on pushing research forward as much as possible to find a treatment or cure for Alzheimer鈥檚 disease by 2025. That鈥檚 one of the goals established in response to the 听signed into law by President Obama in January 2011.
鈥淕etting that data out there, where people can access it and maybe look at it in a different way that no one has thought of, is an important part of meeting that goal,鈥� Kukull said.
To learn more about the NACC and see a list of the center鈥檚 leadership, researchers and staff, go . For more information about the center, contact naccmail@uw.edu