How Researchers Can Tap Into Data and Samples From Alzheimer’s Disease Research Centers

NACC: A Resource for Longitudinal Participant Data

The National Alzheimer's Coordinating Center (NACC) was established in 1999 by the NIA and serves as the centralized data repository, collaboration, and communication hub for the NIA’s ADRC Program. Over the past 25+ years, NACC has partnered with over 42 current and former ADRCs across the U.S. to build one of the world’s largest and most comprehensive longitudinal datasets on AD/ADRD. The NACC Data Platform houses standardized multimodal data on more than 52,000 participants, with up to 20 years of data on some. Participants range from cognitively normal individuals to those with mild cognitive impairment or dementia symptoms, with over 19,000 participants actively followed. The NACC cohort includes individuals with a range of pure and mixed underlying etiologies that are contributing to their dementia symptoms. Data are stored in a secure platform and do not include identifying information, such as participant names or email addresses.

The following data types are collected by ADRCs from consented participants and shared with the global research community via the NACC Data Front Door:

• Uniform Data Set (UDS): NACC’s Uniform Data Set (UDS), collected since 2005, is a standardized, longitudinal, rich multi-domain neurocognitive and phenotypic dataset, collected via annual visits. The UDS includes data on participant demographics, family history, medications, coexisting medical conditions, physical examination, results from numerous assessment instruments (e.g., Clinical Dementia Rating [CDR] Dementia Staging Instrument, Geriatric Depression Scale), clinical assessment of symptoms and diagnosis, and neuropsychological test results. The UDS is in the process of being updated and will include information on social determinants of health and disease modifying drugs. For more information, please visit the UDSv4 updates webpage .
• Standardized Neuropathology: NACC also houses standardized neuropathology data from more than 8,000 participants, 58% of the deceased UDS cohorts.
• Other Data Modalities: NACC also integrates and shares additional data streams for a subset of UDS participants. This includes standardized (see SCAN) and mixed protocol MRI scans and calculated brain volumes, beta-amyloid and tau PET scans and SUVRs, APOE genotypes, cerebrospinal fluid (CSF) biomarker data, and additional modules on participants with Frontotemporal Lobar Degeneration, Lewy Body Dementia, and Down Syndrome. The ADRC Consortium for Clarity in ADRD Research Through Imaging (CLARiTI) will provide extensive amyloid, tau, and neurodegeneration imaging data linked to affiliated data on a clinically, demographically and geographically heterogenous cohort of 2,000 unique ADRC participants, which will be available through NACC.

To learn more about data that is currently available and new data modalities coming soon, please visit the About NACC Data page .

To access data please visit the NACC Data Front Door . It takes 15 minutes to submit a request and sign a DUA via data request process and you can expect to receive data within two business days.

Example Scenario

After receiving longitudinal form-based data from NACC, a participant’s NACC ID can be provided to NCRAD to receive information about biological specimens available for that participant. The same NACC ID can then be provided to NIAGADS to receive genomic data available for the participant.

NCRAD: A Resource for Biological Samples

The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) is a federally funded resource for storing and requesting biological specimens gathered from people enrolled in studies at the ADRCs and other NIA-funded studies. NCRAD has developed online catalogs to provide qualified researchers with information on the publicly available collections. Upon completion of an online data agreement, investigators can obtain an account to log into the catalogs. The NCRAD catalogs incorporate a limited dataset from the NACC UDS, links to NIAGADS genetic datasets and limited biomarker data from the NCRAD Biomarker Assay Laboratory (BAL).

• NCRAD includes samples from participants with sporadic and familial Alzheimer’s disease, Down syndrome, frontotemporal dementia, and aging and healthy controls.
• Samples include DNA, RNA, plasma, serum, CSF, brain tissue, lymphoblastoid cell lines, peripheral blood mononuclear cells, induced pluripotent stem cells (iPSCs), fibroblasts, and feces.

NIAGADS: A Resource for Participant Genetic Data

The NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) is a national genetics data repository that archives and distributes genetic and genomic data for Alzheimer’s disease and related dementias. It serves as the data coordinating center for the Alzheimer's Disease Sequencing Project (ADSP). You can reach out to the NIAGADS team at help@niagads.org .

SCAN: A Supportive Resource for Imaging Data

The Standardized Centralized Alzheimer’s and Related Dementias Neuroimaging (SCAN) ) project was created to aggregate, harmonize, manage, and facilitate sharing of neuroimaging data collected at the ADRCs from both MRI and PET scans. SCAN data includes numeric readouts of multiple MRI and PET variables including but not limited to regional cortical thickness, white matter hyperintensities, and PET measures of amyloid and tau. MRI and PET scans are also available for analysis. Data is available through NACC’s Data Front Door and can be linked to other data from NACC.

Data in Action

In this review article , investigators describe the NACC database and how it can be linked to genetic data at NIAGADS and DNA samples at NCRAD. The article includes examples of how the data was used to study newly defined and recently revised neuropathologic conditions: primary age-related tauopathy (PART), limbic predominant age-related TDP-43 encephalopathy (LATE), and preclinical Alzheimer’s disease.