Researchers around the globe need to have access to standardized data from clinical examinations of Alzheimer's patients in order to better understand and treat this neurodegenerative condition. This is what the National Alzheimer's Coordinating Center has been doing since 1999. It's located in the UW School of Public Health's Department of Epidemiology. The UW center started collecting data from another group of centers located in hospitals and clinics throughout the country, thanks to funding from the NIH’s National Institute on Aging. These centers, Alzheimer's Disease Research Centers , have now increased in number to 35 — including UW Medicine ‘s ADRC — and their data, which range from clinical diagnosis to scans of brains and genomics, has also grown. The National Institute on Aging had already committed $35 million to fund the National Alzheimer's Coordinating Center at UW until 2026. “We have data about approximately 44,000 people, as well as neuropathological examinations and image data on around 6,000,” stated Walter Kukull director of the UW Center and professor of epidemiology. We also have genomics data for a large number of subjects. The data is freely available to researchers around the world, which has resulted in approximately 1,400 research publications. Kukull stated that his team started working with NIA clinical leaders and other country health professionals years ago to create a more thorough and consistent approach to collecting data. “In 2002, we established a standard collection system for neuropathologic information. Kukull stated that in 2005, Kukull worked with all ADRCs and NIA to establish standardized primary data collection and clinical exam across all ADRCs. This was the Uniform data set. It is still in force today. The fourth revision is underway to keep up with current science and clinical practice. Faculty and staff from NACC coordinate national meetings with all centers. They collect and maintain data, guide researchers through data queries, and help to refine hypotheses. Kukull stated that most requests are referred to Kukull, who is a consultant research expert. Kukull added that this helps them get the right information. Researchers can still download the whole set, but we help them to focus on what they want to do and the question they are asking. We're also trying to make it easier for researchers to access and see data. Kukull stated that the grant will allow them to move their huge data, which includes more than 20 years' worth of large images and voice recordings collected in neuropsychological testing, into the cloud. They will continue to improve software capabilities to deal with big data. Kukull stated that Alzheimer's disease is complex and can cause a variety of impairments. As a brain disease, Alzheimer's does not happen by itself. It is a complex disease that can cause cognitive decline and other symptoms, such as vascular disease, small strokes, Lewy body disease, Parkinson’s, or other diseases. This is the biggest question everyone is trying to answer. The NACC, ADRCs, and the NIA all work together to make Alzheimer's disease research more efficient. This is one of the goals set out in response to the National Alzheimer's Project Act, which President Obama signed into law in January 2011. Kukull stated that “Getting that data out, where people can access and possibly look at it in an entirely new way than anyone has before, is an important step towards achieving that goal.
