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NIH AD/ADRD Platforms Workshop: FAIRness Within and Across Data Infrastructures ======================================================================== On June 20th and 21st, 2023, the Division of Neuroscience (DN) at the National Institute on Aging (NIA) held a virtual workshop convening major NIA-supported Alzheimer's disease and related dementias (AD/ADRD) data infrastructures along with data ecosystems from across the National Institutes of Health (NIH) to explore opportunities and challenges for nurturing data ecosystems that (i) promote FAIR (i.e., findable, accessible, interoperable, and reusable) data principles within and across constituent platforms and (ii) support open and inclusive data access and compute resources by researchers and other stakeholders. This workshop explored (i) how biomedical data ecosystems ensure effective discovery and use of data and analytical resources; (ii) the technical, social, and policy solutions that enable such practices; and (iii) the ongoing challenges and opportunities to increase the impact of valuable data resources. The workshop agenda featured: - Introductions to major AD/ADRD knowledge infrastructures, including how they make their resources FAIR, and highlight collaborations and linkages to other data/knowledge resources. - A session on the ethical, legal, and social implications (ELSI) associated with data linkages, which may increase the usefulness and impact of data resources yet also raise important privacy and security concerns. - A session on diversity, equity, inclusion, and accessibility for study participants and researchers. - Breakout groups in which participants joined focused discussion of topics such as data access and security, data linkage and harmonization, data ecosystem architectures, DEIA in an AD/ADRD ecosystem, and data analysis.
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