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

To advance research into Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD), NIA funds centers and programs that gather, coordinate, and share data. These resources are available to investigators who are researching the many facets of AD/ADRD in order to better understand the disease and develop effective treatments and prevention strategies.

A Coordinated Approach to Cataloguing and Sharing ADRC Data

NIA-funded Alzheimer's Disease Research Centers (ADRCs) are located at medical institutions across the United States and collectively follow thousands of research volunteers longitudinally. The research teams who support the resources described on this page work together to track phenotypic data, biological specimens, and genotypic data from ADRC participants and other NIA-funded studies. Researchers can request data or specimens from the relevant NIA-supported resource. Often, multiple types of data are available for the same participants, in which case, participant IDs can be used to tie the various available data together. These anonymous IDs consist of a random number associated with a participant.

NACC: A Resource for Longitudinal Participant Data

The National Alzheimer's Coordinating Center (NACC) maintains a large relational database of standardized clinical and neuropathological research data collected from the ADRCs. Many of the research participants’ brains are also autopsied. The ADRCs contribute data to two main datasets that comprise the full NACC database:

  • Standardized clinical data in the Uniform Data Set (UDS), including data on participant demographics, family history, medications, coexisting medical conditions, physical examination, results from several assessment instruments (e.g., Clinical Dementia Rating [CDR] Dementia Staging Instrument, Geriatric Depression Scale), clinical assessment of symptoms and diagnosis, and neuropsychological test results. Data are stored in secure databases and do not include indentifying information, such as participant names or email addresses.
  • Neuropathologic evaluations obtained at autopsy in the Neuropathology Data Set

Subsets of UDS participants voluntarily share additional data with NACC. Examples include MRI scans and calculated brain volumes, beta-amyloid PET scans, cerebrospinal fluid (CSF) biomarker data, and additional modules on participants with frontotemporal lobar degeneration and Lewy body dementia. To learn more about what data is available, check out a summary of the NACC database or Query System NACC offers two types of data files:

  • Quick-access files contain the complete UDS and Neuropathology datasets from the latest quarterly data archive.
  • Customized files can be created for the investigator after the researcher carefully specifies the file criteria, with or without the guidance of NACC’s research scientists. To request a data file, fill out a data request form and a NACC staff member will be in contact.

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.

  • 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 data related to the genetics and genomics of early-onset Alzheimer’s disease, late-onset Alzheimer’s disease, and Alzheimer’s disease-related dementias. It serves as the data coordinating center for the Alzheimer’s Disease Sequencing Project (ADSP) and several other NIA-funded projects, and is responsible for collecting phenotypes and consent information from participating cohorts.

  • Data types available at NIAGADS include genetic data from NIA-funded studies, deep phenotype data, genome-wide association studies, RNA sequencing, and annotation data. Qualified investigators can submit data requests through the NIAGADS Data Sharing Service (DSS).
  • The NIAGADS Genomics Database (GenomicsDB) allows researchers to search annotation resources that link published AD genetic findings to sequence features and genome-wide annotations. The GenomicsDB consists of a genome browser and hosts summary statistics datasets, many of which are from ADSP analysis. 

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. Data will be available through NACC and will be linked to participant IDs.

What Data Are You Looking For?

Phenotypic data only
  • Go to NACC and view summary tables for the NACC database or use the Query System to explore available NACC data. Submit a data request form to receive either the full quick-access dataset or a smaller, custom dataset.
Phenotypic data and biological specimens
  • Go to NACC and view summary tables for the NACC database or use the Query System to explore available NACC data. Submit a data request form to receive either the full quick-access dataset or a smaller, custom dataset.
  • Go to NCRAD and view the accessing biospecimens and data page to see what ADRC samples are available. Fill out the NCRAD data agreement to access the online catalog. Data requested from NACC and NIAGADS can also be joined to the NCRAD ADC catalog as long as all datasets have the NACC ID included.
Phenotypic data and genotype data
  • Go to NACC and view summary tables for the NACC database or use the Query System to explore available NACC data. Submit a data request form to receive either the full quick-access dataset or a smaller, custom dataset.
  • Go to NIAGADS and find datasets containing genotype and sequence data by visiting the NIAGADS DSS ADC Cohort page. With each dataset, NIAGADS provides basic phenotypic information for each participant. An investigator can request additional phenotypes from NACC or biospecimens from NCRAD using the IDs provided. Instructions for accessing genotyping data can be found on the NIAGADS site while instructions for accessing sequencing data can be found on the DSS site.
Phenotypic data, genotype data, and biological specimens
  • Go to NACC and view summary tables for the NACC database or use the Query System to explore available NACC data. Submit a data request form to receive either the full quick-access dataset or a smaller, custom dataset.
  • Go to NIAGADS and find datasets containing genotype and sequence data by visiting the NIAGADS DSS ADC Cohort page. With each dataset, NIAGADS provides basic phenotypic information for each participant. An investigator can request additional phenotypes from NACC or biospecimens from NCRAD using the IDs provided. Instructions for accessing genotyping data can be found on the NIAGADS site while instructions for accessing sequencing data can be found on the DSS site.
  • Go to NCRAD and view the accessing biospecimens and data page to see what ADRC samples are available. Fill out the NCRAD data agreement to access the online catalog.

 

Learn more about other data sharing resources for researchers.