Data Sharing Resources for Researchers
There are a variety of data sharing policies, considerations, resources, and guidance available to support researchers in safely and efficiently sharing data from their studies. NIA also provides data resources to the Alzheimer’s and broader aging research community.
To learn more about data sharing at NIH, see the NIH Sharing Policies and Related Guidance on NIH-Funded Research Resources and the NIH Data Sharing FAQs,
NIA-funded Data Resources
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. Read NCRAD’s recommended consent language for studies involving biological samples
Alzheimer’s Disease Neuroimaging Initiative (ADNI)
One of the largest public-private partnerships in AD/ADRD research, ADNI collects imaging, genetic, and brain and fluid biomarker data from people with Alzheimer’s and mild cognitive impairment and healthy controls. The ADNI website includes study resources and data, as well as an online resource for sharing, visualizing and exploring neuroscience data.
National Alzheimer’s Coordinating Center (NACC)
NACC was established by NIA in 1999 to facilitate 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.
Accelerating Medicines Partnership Alzheimer’s Disease (AMP AD)
AMP AD is a precompetitive partnership among government, industry, and nonprofit organizations that focuses on discovering novel, clinically relevant therapeutic targets and on developing biomarkers to help validate existing therapeutic targets.
National Institute on Aging Genetics of Alzheimer’s Disease Data Storage (NIAGADS)
NIAGADS is a national genetics repository created by NIA to facilitate access by qualified investigators to genotypic data for the study of genetics of late-onset Alzheimer's disease. Visit the NIAGADS website for related documents and guidance.
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 100 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 NIA Genetics of Alzheimer's Disease Data Storage site (NIAGADS).
Health and Retirement Study (HRS)
The University of Michigan 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. Data for the United States, Mexico, England, and India are already available; future releases will include data for 27 other European countries, China, and a rural region of South Africa. All HCAP data will be made available via the Gateway to Global Aging Data.
Gateway to Global Aging Data
The Gateway to Global Aging Data is a platform to facilitate use of the family of Health and Retirement Studies around the world , a collection of comparable longitudinal nationally representative aging studies. 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 Archive of Computerized Data on Aging (NACDA)
NACDA is responsible for archiving and sharing data sets concerned with the process of aging, health-related subjects, and the attitudes and behavior of the aged 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 provide tools to help researchers identify and download data elements via a search tool to facilitate data discoverability and use..
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.
Genomics Data Sharing Guidance
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.
Data Sharing Guidance and Considerations for Research Planning
These resources from NIH and HHS can support researchers in integrating data sharing into their research efforts.
- NIH Key Elements to Consider in Preparing a Data Sharing Plan under NIH Extramural Support
- NIH Data Sharing Policy and Implementation Guidance
- NIH Data Sharing Workbook (PDF) or (MS Word)
- NIH Data Sharing Brochure
- HHS Office for Human Research Protections Compilation of Guidances on the EU GDPR
- NIH Consent template
Technical Resources to Support Data Sharing
These tools support categorizing and organizing research data. View the full list of NIH Data Sharing Repositories, and read the NIH Guidance for requesting funds in grant applications for data sharing.
Critical Path for Alzheimer’s Disease (CPAD)
CPAD is a public-private partnership aimed at creating new tools and methods that can be applied to increase the efficiency of the development process leading to treatments for neurodegenerative diseases that progress to dementia with the shared characteristics of Alzheimer’s.
HIPAA Privacy Requirements
Get guidance on how the Health Insurance Portability and Accountability Act (HIPAA) applies to your research.