A Unified Effort: NACC’s Role in the National Institute on Aging’s Alzheimer’s Research Initiative
The National Institute on Aging (NIA) funds Alzheimer's Disease Research Centers (ADRCs) across the United States to advance research on Alzheimer’s disease and related dementias (AD/ADRD). These centers, while operating independently, are unified through the National Alzheimer’s Coordinating Center (NACC), which serves as the central hub for data collection, standardization, and collaboration.
NACC was established in 1999 to facilitate the harmonization of ADRC-generated data and to provide a robust infrastructure for collaborative research. As the data and informatics backbone of the ADRC Program, NACC ensures that the valuable clinical, imaging, neuropathological, and biomarker data collected across ADRCs are integrated into a standardized and accessible format. This centralized data repository allows researchers worldwide to conduct large-scale studies that would not be possible using single-center data alone.
NACC works closely with NIA to support the ADRC Program’s mission of accelerating scientific discoveries that improve prevention, diagnosis, and treatment strategies for AD/ADRD. By developing and maintaining the Uniform Data Set (UDS)—a standardized framework for clinical and neuropathological data collection—NACC enables consistency across all ADRCs, ensuring that data from different centers can be seamlessly combined and analyzed.
Driving Scientific Discovery
Through its data-sharing platform, NACC has enabled researchers to access multimodal data from ADRC participants, including clinical assessments, imaging (MRI/PET), genomics, and digital biomarkers. This has led to over 1,350 peer-reviewed publications, with a significant increase in research utilizing ADRC data in recent years. NACC also supports the integration of emerging data types, such as real-world evidence and digital neuropathology, further expanding opportunities for discovery.
Beyond data management, NACC plays a crucial role in fostering collaboration among ADRCs, NIA, and the broader research community. Through initiatives like the ADRC Program Community Forum, biannual ADRC meetings, and collaborative workshops, NACC provides a platform for researchers to share insights, develop new study methodologies, and explore interdisciplinary approaches to AD/ADRD research.
Strengthening the ADRC-NIA Ecosystem
NACC’s integration within the NIA research landscape extends beyond the ADRC Program. By collaborating with key NIA-funded initiatives—such as the Standardized Centralized Alzheimer’s and Related Dementias Neuroimaging (SCAN) initiative, the Alzheimer’s Disease Data Initiative (ADDI), and the AD Knowledge Portal—NACC ensures that ADRC data are linked with complementary datasets to maximize research impact. Additionally, NACC’s partnerships with organizations like NIAGADS (for genomics data) and NCRAD (for biological samples) allow researchers to leverage multimodal datasets in novel ways, accelerating progress toward precision medicine approaches for AD/ADRD.
