NIA’s Alzheimer’s Disease Research Centers: Tap into four decades of resources

A national network for Alzheimer’s and related dementias research

The first five ADRCs were established by Congress in 1984 as NIH Centers of Excellence. Since then, the program has evolved into a network of 35 NIA-funded ADRCs, across 24 states, that serve as a national resource for dementia research, including the development of more effective approaches to prevention, diagnosis, care, and therapy, and better understanding risk factors. ADRC staff conduct basic, clinical, translational, and behavioral research; train investigators; and exchange ideas and data across the network and with the scientific community.

To meet the ADRC program’s growing data and coordination needs, NIA established the National Alzheimer’s Coordinating Center (NACC) in 1999. The NACC has served as the ADRC program data repository and enabled collaboration and communication with and among the ADRCs. ADRCs are required to collect an annual Uniform Data Set (UDS) of clinical and neuropathological research data on clinical research participants. This wealth of combined data has supported significant advances in our understanding of Alzheimer’s disease and other neurodegenerative diseases. To date, the NACC has assembled longitudinal data from more than 52,000 research volunteers from across the country, including more than 195,000 clinical assessments and 8,000 neuropathology exams.

How to access ADRC data and resources

In addition to UDS data, researchers can now request NACC data , at no cost to them, including newly available Standardized Centralized Alzheimer’s and Related Dementias Neuroimaging (SCAN) -compliant MRI and PET images acquired through ADRCs and connected to the UDS. This dataset includes summary and analysis data from thousands of images.

Another important resource is the National Centralized Repository for Alzheimer’s Disease and Related Dementias ( NCRAD ). NCRAD provides sample banking, access, and study coordination services to support dementia research by facilitating the sharing and distribution of uniformly collected, high-quality biospecimens from participants across the breadth of NIA-funded research in this area. NCRAD also provides biomarker assays on multiple platforms. In addition, genome-wide association study data and whole genome/exome sequence data are available from the NIA Genetics of Alzheimer’s Disease Data Storage Site via the NACC Data Platform.

Additional ADRC data coming soon

If you’re interested in ADRC data, keep an eye out for a major update to the UDS in 2025 which will include better data on early behavioral symptoms; social determinants of health; gender identity, sexual orientation, and multiracial/multiethnic identities; and Alzheimer’s drugs. Researchers can also look forward to data from a recently NIA-funded program, the ADRC Consortium for Clarity in ADRD Research Through Imaging , which will provide beta-amyloid, tau, and neurodegeneration imaging data linked to extensive affiliated data on a clinically, demographically, and geographically diverse cohort of 2,000 unique ADRC participants.

Reach out to get started

The ADRC network has a wealth of longitudinal clinical, neuropathological, biomarker, and imaging data that is freely available to the scientific community. To get started accessing data and samples, check out our online guide or leave a comment below!

Data Sharing Scientific Resources 2024-11-19T00:00:00Z