Your Gateway to Comprehensive Alzheimer's Research Data
NACC partners with the National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD), the NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS), the Alzheimer’s Disease Genetics Consortium (ADGC), and the Alzheimer’s Disease Research Centers (ADRCs) to support genome-wide association studies (GWAS) in AD. Together, we track phenotypic data, biologic samples (such as DNA, blood, and brain tissue), and genotype data from ADRC participants and link that data with NACC’s clinical, neuropathology, and imaging datasets.
Researchers can request data or specimens from the relevant NIA-supported repository (see below). Often, multiple types of data are available for the same participants; in such cases, researchers can use participant identifiers, such as the NACCID, to tie the various available data together.
NACC Data
NACC provides longitudinal clinical data on over 50,000 participants in its Uniform Data Set (2005-present), and neuropathologic data on a subset of these. In addition, the Minimum Data Set (MDS), offers abstracted data on ADRC subjects from 1984 to 2005. A large number of these also have neuropathology data.
For more information about NACC’s large relational database of standardized clinical and neuropathological research data, check out a summary of the NACC database, query system, or the UDS Researcher’s Data Dictionary. A NACC data request can take the form of a Quick Access Full Data File, or a custom data set tailored to your research question.
Request Genetic Data from NIAGADS
NIAGADS is a national repository that archives, processes, and shares genetics and genomics data on Alzheimer’s disease. It provides qualified researchers with access to genomic and biomarker data, genome-wide association studies, and advanced analyses such as RNA-Seq and CHIP-Seq, enabling comparisons between individuals with and without cognitive impairment.
Request Bioloogical Samples from NCRAD
NCRAD banks a wide range of biospecimens from dementia studies, including DNA, RNA, plasma, serum, CSF, brain tissue, lymphoblastoid cell lines, PBMCs, iPSCs, fibroblasts, and feces. Its catalogs include limited data from the NACC Uniform Data Set (UDS) and provide links to NIAGADS datasets for subjects with genetic data, all available to qualified investigators.
Request ADRC Genetic Data from ADGC
ADGC is NIA-funded research grant to conduct genome-wide association studies (GWAS) to identify genes associated with an increased risk of developing late-onset Alzheimer’s disease (LOAD). The goal of the ADGC is to identify genetic variants associated with risk for AD. Researchers affiliated with an ADRC may request genetic data from ADGC from any Center, including their own.
Tips on Requesting Data from Our Partners
NCRAD: To see what ADRC samples are available at NCRAD, please visit NCRAD’s section on accessing data and look for the ADRC cohort. Complete the NCRAD data agreement to get a login to access the online catalog. The catalog includes a limited set of data from NACC, along with specimen information to help you select samples that best fit your research needs. Inclusion of the NACC ID allows data requested from NACC and NIAGADS to be linked to the NCRAD ADRC catalog.
ADGC: ADRC researchers should contact ADGC directly for access to the genotype and sequencing data.
NIAGADS: Browse the data available at NIAGADS, create an account, and submit your request.
Genotypic Data
Researchers can request access to genetic data directly from ADGC or NIAGADS. To help researchers with these requests, NACC provides Quick Access Files that show the number of participants with available genotype data who meet specific eligibility criteria. Once approved by ADGC or NIAGADS, researchers may also request related phenotype data from NACC.
Genotypes are imputed using standard reference panels such as the Haplotype Reference Consortium (HRC) and 1000 Genomes, making the data compatible with widely used analysis tools.
Using NACCIDs to combine these resources
There are many ways to combine these resources. For example, after receiving longitudinal data from NACC, a researcher can submit a participant’s NACCID to NCRAD to receive any biological specimens and/or to NIAGADS to receive any genomic data available for the participant.