Core-008

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Efforts to improve maternal and child population health outcomes require access to reliable and timely data while appropriately addressing challenges related to regulatory barriers, privacy issues, data ownership, and technical limitations. In the Center for Clinical and Translational Science and Training (CCTST) 2.0, we addressed these challenges with the implementation of the first phase of the Lifespan Data Integration Module. Program goals included 1) supporting seamless integration of maternal, neonatal, and pediatric records to establish a population-based, regional perinatal research data repository, or data hub, which would also enable linkage to ancillary data sets using individual level identifiers or geocoded address information; and 2) investigating longitudinal lifespan exposures before, during, and after pregnancy that impact disease susceptibility and health trajectories. We addressed regulatory concerns [Institutional Review Board (IRB) protocol approval granted at Cincinnati Children’s Hospital Medical Center (CCHMC) and the University of Cincinnati (UC) Medical Center], established formalized data sharing agreements, and convened a stakeholder advisory board to approve distributions of de-identified data sets. We acquired data representing over 150,000 mothers and their infants born from 2013-2018 from CCHMC, Every Child Succeeds, and UC Health. These data were geocoded and linked using automated and validated algorithms built by the study team with technical details and a roadmap for overcoming regulatory challenges outlined in several peer-reviewed publications. Multidisciplinary partnerships have likewise published results of studies using the Lifespan Data Integration Module. One study team leveraged the module’s geocoding capability to implement census tractlevel neonatal surveillance representing rates of intrauterine opioid exposure, neonatal abstinence syndrome, and hepatitis C exposure. Another team study evaluated trends in antibiotic use among newborns with abdominal wall defects. For the next phase of the Lifespan Data Integration Module under CCTST 3.0, we will: 1) increase the volume of core records by integrating electronic health records from additional birth hospitals and incorporate vital statistics records; and 2) expand the types of data contained through integration of social determinants, environmental exposures, and a biospecimen research inventory. As a result, the Lifespan Data Integration Module will continue to catalyze perinatal research efforts through engagement of additional multidisciplinary teams, both within and external to the CCTST community.