Highlights | The power behind accessible data
- The National Alzheimer’s Coordinating Center (NACC) collects crucial data on the disease, currently resulting in about 900 publications since 1999.
- The NACC consists of a large network of around 35 NIH-funded Alzheimer’s Disease Research Centers who collect and share data internationally for free to researchers.
- In July 2021, the NACC received a new round of five-year funding totaling approximately $35 million.
With so many brilliant clinical leaders within the Alzheimer’s research space, there was a critical need for a place to house and coordinate the data they collected and translated. This led to the creation of the National Alzheimer’s Coordinating Center in 1999, established by the National Institute on Aging to make collaborative research easy, accessible and free to researchers.
The best part? The NACC is led by several faculty and staff in the Schools of Public Health and Medicine. The NACC is directed by Walter Kukull, PhD, professor of Epidemiology at UW School of Public Health.
Deputy Director Kari Stephens, PhD, is an associate professor in Family Medicine and adjunct associate professor in Biomedical Informatics and Medical Education at UW School of Medicine.
Associate directors include Sean Mooney, professor of Biomedical Informatics and Medical Education and Chief Research Information Officer at UW Medicine; Charles Mock, professor in departments of Surgery (SOM) and Global Health and Epidemiology (SPH); and Gary Chan, professor of Biostatistics UW School of Medicine.
What is the National Alzheimer’s Coordinating Center?
Since their inception in 1999, the NACC has worked toward creating and maintaining a robust database of information that has allowed researchers to translate data into improved diagnoses around Alzheimer’s disease. This allows for new ways to find, care, treat and possibly prevent Alzheimer’s and related dementias. The collaborative nature is part of the magic of the research, with the NACC as the common ground.
“We work together in a lot of ways. It’s a very collaborative and collegial network, and in one sense, we’re the hub of that network,” says Kukull.
The organization also partners with the Alzheimer’s Disease Genetics Consortium, the National Centralized Repository for Alzheimer’s Disease and Related Dementias and the National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site to create a large network of available data for researchers.
When it comes to the influential work that researchers are doing, it’s easy to imagine an abundance of information that comes with the burning question: How is the data collected?
How is Data Collected at the National Alzheimer’s Coordinating Center?
The NACC collects much of their data from Alzheimer’s Disease Research Centers, (ADRC), who source the data through standardized evaluations of the research participants. The information is collected annually during the participants’ office and home visits for their Alzheimer’s disease or related dementias.
One of the ADRCs the NACC collects from includes the ADRC at UW, a NIH-funded research center associated with the UW Medicine Memory and Brain Wellness Center.
At each of these research centers, trained clinicians collect the data, that is sent to the NACC and other data hubs. Outside of the clinic, close friends and family members can collect data from participants to track changes between appointments.
The NACC has been fully –funded since its inception, and with a recent $35 million commitment from the National Institute of Aging, these data collectors, researchers and clinical professionals can continue to discover groundbreaking information around the disease.
New five-year funding from the National Institute on Aging
The NACC does not plan on slowing down any time soon — in fact, just the opposite. With the new funds, the research center plans to innovate the ways in which their data is accessed.
“We are moving our NACC Data Group staff under UW Research Informatics and IT, still funded directly by NACC grant, beginning in October. This should really provide a lot of stability and organization structure, as well as collegial contact and professional development for the staff,” says Kukull.
Due to the always-developing nature of Alzheimer’s research, the support of the National Institute on Aging allows the NACC to continue developing robust systems to house their data, collaborate with other researchers and facilitate studies around the disease.
“We have a lot of innovations going on the technical side to stay modern. It’s important to move forward in the whole science of Alzheimer’s,” says Kukull.
The future of the National Alzheimer’s Coordinating Center
The data and research available at the NACC is so extensive, they encourage researchers of all disciplines to see if there’s anything valuable for their studies waiting within the organization’s database.
“I’d like people at the University to know that we’re here,” says Kukull. “Researchers in other disciplines can do important work with some of the data that we have, and they are welcome to have access. We’re easy to contact and we’ll try to help as much as we can.”
How to request data as a researcher
If you are a researcher who might want some of the data that the NACC collects, the research center has an easy-to-follow process for those interested in requesting data at naccdata.org
- Read an overview about the available data sets.
- Review the NACC Handbook: A Researcher’s Guide.
- Use the simple web query system to get a sense of the available data.
- Accept the terms and conditions of the NACC Data Use Agreement.
- Submit your data request.
After completing these steps, the NACC will create your data set. They are near implementation of a new, self-service data visualization and selection tool called LEAF, developed by UW RIT, which will make this process even easier and better. Whether it’s a custom data set tailored to your specific research question, or a quick-access full data file, you’ll be well on your way to diving into some extremely valuable information.
