Beyond Today: Building a Federated Infrastructure for Lifespan Health and Disease Research

About This Grant

Project Summary Health research at academic institutions remains fragmented—dominated by single-grant studies, retrospective designs, and siloed datasets—hindering our ability to track developmental and aging processes across the lifespan. This is particularly limiting for identifying early neurodevelopmental markers that influence long-term aging outcomes. Early-life adversity and environmental exposures shape brain, immune, and inflammatory systems in ways that elevate chronic disease risk over decades. Despite the growing need for integrative, prospective research, most institutions lack scalable, secure infrastructure to support longitudinal, multi-modal, and participant-centered data reuse. Beyond Today addresses this critical gap by developing a federated, next-generation Repository-as-a-Service (RaaS) that links research volunteer registries and longitudinal datasets across institutions, timepoints, and data modalities. The infrastructure integrates two core components: • Research Volunteer Registry supporting dynamic consent, recontact, and longitudinal engagement • Longitudinal Data Repository enabling secure, standards-aligned data harmonization and sharing, built on FAIR and TRUST principles. Other features of Beyond Today include federated data management, graduated data governance, and a cloud- based analytic workbench with reusable pipelines and AI-ready tools. Beyond Today will be implemented in two phases: • R61 Phase (Yale): Develop and deploy a functional prototype tested by three research groups spanning early childhood to older adulthood. Key milestones include metadata index development, registry-repository integration, governance protocol deployment, and analytic workbench implementation. • R33 Phase (ACRI Expansion): Extend the infrastructure to Arkansas Children’s Research Institute (ACRI) to validate cross-site federation, expand metadata coverage, and support long-term scalability. Go/No-Go Criteria for R33 Transition: Completion of a functional prototype at Yale, integration with three pilot groups, finalized metadata and governance standards, operational beta of the analytic workbench validated with test data, and written commitment from at least one repository partner for sustainability. Failure to meet these criteria, as documented internally and reported to NIA, will result in termination prior to R33. By enabling secure, scalable, and reproducible longitudinal research, Beyond Today will empower investigators to uncover how early-life factors shape lifelong health. The platform supports NIH priorities in aging, open science, and data integration, while reducing infrastructure barriers for under-resourced research teams.