AD Data Initiative Repository

Do you have anonymized or pseudo-anonymized human or human-derived data (clinical, -omics, imaging, synthetic, and more)? Is it related to Alzheimer’s disease or related dementias, aging, or healthy controls? Is it harmonized and curated? Do you want to share it with the global research community?

Data contributors can work with ADDI to securely share, in a permissible manner, their data on the AD Data Initiative Repository. While bio-samples are not accepted, information about how they can be accessed can be included with a dataset listing.

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 are,

  • 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

Contact us to learn about other features.

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 to Guides

If a data contributor is interested in learning how to include the AD Data Initiative Repository in their data management and sharing plan, please ensure you have an ADDI account and complete our Dataset Intake Form. Data users can follow step by step guide on how to access data.

How to Submit DataHow to Access Data

Contact us with any questions.