National Alzheimer's Coordinating Center (NACC)
The National Alzheimer's Coordinating Center was established by the National Institute on Aging (U01 AG016976) in 1999 to facilitate collaborative research and to record the cumulative enrollment of the NIA-funded Alzheimer’s Disease Centers (ADCs). Using data collected from these Centers across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data. In partnership with the Alzheimer's Disease Genetics Consortium (ADGC) and the National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD), NACC provides a valuable resource for both exploratory and explanatory Alzheimer's disease research.
The NACC database, which is the largest resource of its kind in the U.S., serves as a cumulative record of the subjects enrolled at the ADCs since the beginning of the program in 1984. Between 1984 and 1999, when NACC was established, data on enrollees were collected mainly by retrospective data abstraction from existing records. With the creation of the Uniform Data Set in 2005, data were collected prospectively, using a standardized clinical evaluation administered at annual visits. The new data set provided NIA, the ADC Program, and researchers worldwide with comparability, detail, and power that had previously been unavailable, as well as the ability to track change over time on a wide variety of data elements.
The NACC database comprises the following data sets:
- The Uniform Data Set (UDS) — longitudinal data, collected annually, by means of a standardized clinical evaluation given to participants seen at the NIA-funded Alzheimer’s Disease Centers. The subjects (who range from cognitively normal to mildly cognitively impaired to demented) undergo a complete examination each year, yielding demographic data, neuropsychological testing scores, and clinical diagnosis. APOE genotype is available on more than 60 percent of UDS enrollees. The UDS has recently been expanded to include a new module focusing on frontotemporal lobar degeneration. In addition, the UDS has begun accepting sMRI images and data on its subjects. Plans are under way to collect other kinds of images as well as biomarker data from biospecimens such as CSF.
- The Neuropathology Data Set (NP) — standardized neuropathology data on subjects followed in the UDS and/or the Minimum Data Set (MDS, see below) who have died and undergone autopsy.
- The Minimum Data Set (MDS) — cross-sectional data, collected retrospectively, on ADC subjects before the introduction of the UDS in 2005.
NACC data are freely available to all researchers, and NACC research scientists provide consulting at no charge to ensure the selection of appropriate data elements tailored to each research question. To submit a data request or for more information, please visit the NACC website.