Imagine a global treasure hunt where scientists from all over the world combine their knowledge and resources to unlock the secrets of Alzheimer’s disease and related dementias. Just like data sharing accelerates scientific progress, these daring adventurers are pursuing approaches to federate data and overcome the challenges of complex biomarker data scattered across different organizations and countries. They’re not alone in their quest, as other scientific communities also face similar obstacles. While centralized platforms have been attempted, they often encounter resistance due to data governance and sovereignty concerns. That’s why federation, a system where data remains in its original location but is accessed through a shared infrastructure, has become a promising alternative. However, this endeavor comes with its fair share of challenges, such as ensuring user-friendly experiences and analyzing unstructured data. As we explore the federated data sharing approaches of DPUK, GAAIN, and ADDI in this article, we discover that these initiatives are pushing the boundaries of research collaboration. Exciting question marks now hover in the air, waiting for the collective wisdom of the research community to provide the answers.

There is common consensus that data sharing accelerates science. Data sharing enhances the utility of data and promotes the creation and competition of scientific ideas. Within the Alzheimer’s disease and related dementias (ADRD) community, data types and modalities are spread across many organizations, geographies, and governance structures. The ADRD community is not alone in facing these challenges, however, the problem is even more difficult because of the need to share complex biomarker data from centers around the world. Heavy-handed data sharing mandates have, to date, been met with limited success and often outright resistance. Interest in making data Findable, Accessible, Interoperable, and Reusable (FAIR) has often resulted in centralized platforms. However, when data governance and sovereignty structures do not allow the movement of data, other methods, such as federation, must be pursued. Implementation of fully federated data approaches are not without their challenges. The user experience may become more complicated, and federated analysis of unstructured data types remains challenging. Advancement in federated data sharing should be accompanied by improvement in federated learning methodologies so that federated data sharing becomes functionally equivalent to direct access to record level data. In this article, we discuss federated data sharing approaches implemented by three data platforms in the ADRD field: Dementia’s Platform UK (DPUK) in 2014, the Global Alzheimer’s Association Interactive Network (GAAIN) in 2012, and the Alzheimer’s Disease Data Initiative (ADDI) in 2020. We conclude by addressing open questions that the research community needs to solve together.

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