AD Data Initiative Repository: No Cost to Manage and Share Alzheimer’s Data
Enabling secure data sharing with the global research community
The AD Data Initiative Repository is a cloud-based platform where contributors can securely share Alzheimer’s disease and related dementias data with the global research community. The AD Data Initiative Repository is an NIH-supported domain-specific repository that includes clinical, -omics, imaging, and synthetic data.
Overview
The AD Data Initiative Repository is a cloud-based platform that data contributors can use to manage and share their data. Some of the repository’s key features include:
- Available at no cost to data contributors
- Secure platform, with clearly outlined privacy policy and terms of use
- Different permissioning levels are available
- Dataset requests are logged; metadata and data access generate an audit trail
- Standard set of variables (with code) for metadata and data is used – harmonization to any specific standard is not required
2023 NIH Policy for Data Management and Sharing
The new Policy for Data Management and Sharing from the US National Institutes of Health (NIH) requires NIH-funded institutions generating scientific data to develop and implement a plan to manage and share that data. This policy reinforces the NIH’s commitment to data sharing and that it is fundamental to the research process.
For data contributors looking for a repository to fulfill this requirement, the AD Data Initiative Repository is an NIH-supported domain-specific repository.
How Can I Manage and Share My Data?
If a data contributor is interested in learning how to include the AD Data Initiative Repository in their data management and sharing plan, register for an AD Workbench account and apply to submit your data.
Frequently Asked Questions
How is the AD Data Initiative Repository different from AD Workbench?
Is there a cost to contribute data?
Can I contribute biological samples?
Ready to Contribute to the Repository?
Contribute your anonymized or pseudo-anonymized data to make your research discoverable to the global ADRD research community. All you need to do is create an AD Workbench account and complete our dataset intake form.