Data Sharing Resources for Researchers
There are a variety of data sharing policies, considerations, and guidance available to support researchers in safely and efficiently sharing data from their studies. NIA and its partners and grantees also provide data resources to the Alzheimer’s and broader aging research community.
On this page you can explore:
NIA-Supported Data Sharing Repositories: NIA-funded repositories that accept data submissions from the research community.
Other NIA-Supported Data Sharing Resources: NIA-funded repositories and knowledge bases that do not accept data submissions from the research community, but are valuable sources of aging and AD/ADRD data.
Data Sharing Guidance: Find resources and guidance to integrate data sharing into your research planning, navigate technical and privacy concerns, and more.
You can also browse data sharing resources from across NIH, view generalist repositories that hold a broad variety of data, explore NIA-specific guidance, and find additional information about data sharing at NIH.
NIA-Supported Data Sharing Repositories
The research community can submit data to and access data from these NIA-funded resources.
Aging Research Data Sharing Repositories
AgingResearchBioBank: This AgingResearchBiobank provides an inventory system for the storage and distribution of data and biospecimens from aging-related studies to the broader scientific community. This NIA resource has two components: a biorepository that receives, stores, maintains, and distributes biospecimens from different study collections to qualified investigators, and a data repository that receives, archives, maintains, and distributes databases from different study collections. The data repository also analyzes stored data in response to inquiries, assists ongoing studies in preparing data for eventual archiving, assists in the selection of appropriate biospecimens for proposed secondary research, and coordinates cross-referencing between the two components of the Biobank. Researchers can submit individual-level data from NIA-supported clinical studies and observational studies.
National Archive of Computerized Data on Aging (NACDA): NACDA archives and shares data sets concerned with the process of aging and health and the attitudes and behavior of the older population. The NACDA archive includes data from the Midlife in the United States (MIDUS) and the National Social Life, Health, and Aging Project (NSHAP) studies, two longitudinal panel studies supporting multidisciplinary research on aging and dementia. NACDA provides tools to help researchers identify and download data elements to facilitate data discoverability and use. NACDA encourages deposits of digital data on aging.
Primate Aging Database (PAD): PAD is a web-based searchable database that contains body composition, blood chemistry, and other biological data collected across the lifespans of healthy non-human primates (NHPs) in captivity and in wild populations. The PAD was developed to study aging in NHPs and can be used for analyses of species and sex differences in normal aging processes, the examination of the impact of diet and environment on aging, studies on biomarkers of aging, and the establishment of a normal range for comparison to values obtained from experimental or diseased groups.
Alzheimer’s and Related Dementias Research Data Sharing Repositories
AD Knowledge Portal: The AD Knowledge Portal is a repository and distribution site for multi-omic data from human samples, cell-based and animal models, analysis results, analytical methodology, and research tools generated by multiple NIA-supported Alzheimer's disease research programs and consortia. Data is available to qualified investigators through open or controlled access depending on the data type and source. The portal was created through the Accelerating Medicines Partnership® Alzheimer’s Disease.
National Institute on Aging Genetics of Alzheimer’s Disease Data Storage (NIAGADS): NIAGADS is a national genetics repository designed to facilitate access by qualified investigators to genotypic data for the study of Alzheimer’s genetics
Other NIA-Supported Data Sharing Resources
The research community can access data from these NIA-funded repositories and knowledgebases. They do not accept data submissions, but are valuable sources of aging and AD/ADRD data.
Aging Research Data Resources
Baltimore Longitudinal Study of Aging (BLSA): BLSA is America's longest-running scientific study of human aging. An observational study, BLSA researchers measure physical and cognitive changes associated with aging in more than 3,200 volunteers in real time. Researchers can apply to use BLSA data and view previously approved studies and publications, as well as measures and codebooks from the study.
Health, Aging, and Body Composition Study (HealthABC): HealthABC was an interdisciplinary study focused on risk factors for the decline of function in healthier older adults, particularly change in body composition with age. The study was designed to address differences in onset of functional limitation, disability, and longevity between older men and women as well as between Blacks and Whites. Researchers can apply to use HealthABC data.
Health and Retirement Study (HRS) and Gateway to Global Aging Data: The Health and Retirement Study is a longitudinal panel study that surveys a representative sample of approximately 20,000 people in America, supported by NIA and the Social Security Administration. There are a variety of data resources available from HRS. A major new resource for the study of cognitive aging is data from the Harmonized Cognitive Assessment Protocol (HCAP), an ancillary cognitive aging study to HRS projects around the world. HCAP data is available via the Gateway to Global Aging Data, a platform to facilitate use of the family of Health and Retirement Studies around the world. This site offers a digital library of survey questions, a search engine for finding comparable questions across surveys, and identically defined variables for cross-country analysis.
National Health and Aging Trends Study (NHATS): NHATS includes a nationally representative sample of Medicare beneficiaries aged 65+ and facilitates research on disability, independent functioning, and caregiving at older ages.
NIDUS Delirium Research Hub: A database of completed or ongoing studies that include delirium as an outcome or predictor. The NIDUS Hub includes study metadata such as study design, sample characteristics, collected biospecimens, neuroimaging tests, neuropsychological testing, and pharmacologic interventions for studies touching on delirium research.
Patient-Reported Outcomes Measurement Information System (PROMIS): PROMIS is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children.
Alzheimer’s and Related Dementias Research Data Resources
Alzheimer’s Disease Neuroimaging Initiative (ADNI): One of the largest public-private partnerships in AD/ADRD research, the NIA-funded ADNI study collects imaging, genetic, and brain and fluid biomarker data from people with Alzheimer’s and mild cognitive impairment as well as healthy people. The ADNI website includes study resources and data, as well as an online resource for sharing, visualizing, and exploring neuroscience data.
Alzheimer’s Disease Sequencing Project: Funded under a number of cooperative agreements and research grant awards, the Alzheimer’s Disease Sequencing Project comprises more than 300 investigators from dozens of institutions across the United States. Sequence data are available by application to the Database for Genotypes and Phenotypes (dbGaP) or the NIAGADS.
ApoE Pathobiology in Aging & Alzheimer's Disease (EPAAD): EPAAD is established to serve both the research community and the public as a source of existing and new knowledge on apoE; links to publications and datasets relevant to apoE in aging, Alzheimer’s disease (AD), and related dementias; a list of currently available resources, and a forum for discussion. Our mission is to provide current knowledge and the latest findings on apoE biology and pathobiology, while providing information on resources and a platform for data sharing.
CRISPRbrain: An open-science data commons, CRISPRbrain provides functional genomics screens in edited, differentiated human cell types. This resource is available through a collaboration between the NIH Center for Alzheimer’s and Related Dementias (CARD) and the Kampmann Lab at the University of California-San Francisco.
GenoML: GenoML is a repository for democratized genomics and automated machine-learning workflows. GenoML provides an end-to-end framework for genomic datasets, including the most complex parts of the process, such as data pre-processing and cleaning, to more advanced training and tuning. GenoML intelligently explores many possible techniques to find the best model for the specific input data. GenoML was developed by CARD.
National Alzheimer’s Coordinating Center (NACC): NACC facilitates collaborative research and to record the cumulative enrollment of the NIA-funded Alzheimer’s Disease Research Centers (ADRCs). It has developed and maintains a large relational database of standardized clinical and neuropathological research data.
Protein Polymorph Resource Network (PPRN): The PPRN was created in 2021 by the National Institute on Aging to standardize the isolation and characterization of tau aggregates and fibrils for the greater Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRC) research communities.
The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD): Funded by the NIA since 1990, NCRAD is a national resource for storing and requesting clinical information and biological materials from individuals with Alzheimer’s disease and/or related dementias as well as healthy controls.
The North American Prodromal Synucleinopathy Consortium (NAPS Consortium): The goal of the North American Prodromal Synucleinopathy Consortium is to support clinical care, advance discovery, promote education, and engage the community in order to improve the quality of life and care of individuals living with REM Sleep Behavior Disorder (RBD). Through these efforts, the aim is to develop treatments that will delay the onset of, or prevent the development of, neurodegenerative disorders associated with RBD.
Seattle Alzheimer's Disease Brain Cell Atlas (SEA-AD): The Seattle Alzheimer’s Disease Brain Cell Atlas (SEA-AD) consortium strives to gain a deep molecular and cellular understanding of the early pathogenesis of Alzheimer’s disease. To accomplish this, we are leveraging advances in next-generation single-cell molecular profiling technologies developed through the BRAIN Initiative and at the Allen Institute for Brain Science. We are integrating single-cell profiling technologies with quantitative neuropathology and deep clinical phenotyping through collaboration with the University of Washington Alzheimer's Disease Research Center (ADRC) and Kaiser Permanente Washington Health Research Institute (KPWHRI), to create a multifaceted open data resource. We seek to understand the cellular and molecular changes that underlie Alzheimer’s disease initiation and progressive cognitive decline, with the ultimate goal of identifying targets for therapeutic intervention.
Data Sharing Guidance
NIA’s Alzheimer’s Disease Genomics Sharing Plan
NIA supports infrastructure and related policies to facilitate data and sample sharing arising from its Alzheimer’s Disease (AD) Genetics Initiative, a research initiative to assist in the identification of the risk and protective factor genes/loci for Alzheimer’s disease. Read more in the AD Genomics Sharing Plan Toolkit and visit the NIH FAQs on Genomic Data Sharing.
Model Organism Sharing Guidance
A model organism sharing plan is expected for all applications where the investigators anticipate developing model organisms. Read more about the Model Organism Sharing Policy.
Research Software and Source Code Sharing Guidance
The NIH promotes sharing of research software and source code, developed under research grants in any stage of development, in a free and open format. Releasing the software source code in an “open” manner means that you permit users to use, modify, and/or redistribute the code. Data Management and Sharing Plans need to indicate whether specialized tools are needed to access or manipulate shared scientific data to support replication or reuse, and the name of any required tool or software. Read about best practices for sharing research software.
The following tools and resources from NIH and HHS can support researchers in integrating data sharing into their research efforts.
- NIA Data Management and Sharing Guidance
- NIH Data Management and Sharing Policy
- NIH Data Sharing Repositories
- NIH Office of Science Policy
- HHS Office for Human Research Protections Compilation of Guidances on the EU GDPR
- HHS OHRP Q&A: Broad Consent and informed consent in the Revised Common Rule
- Information on HIPAA for HHS clinical research, methods for de-identification of protected health information (PHI), and use and disclosure of PHI
- Read recent NIA blog posts on data sharing