Core-008

改善孕产妇和儿童健康成果的努力需要获得可靠和及时的数据 同时适当解决与监管障碍、隐私问题、数据所有权以及 技术限制。在临床和转化科学与培训中心（CCTST）2.0中，我们 通过实施生命周期数据集成模块的第一阶段解决了这些挑战。 计划目标包括：1）支持孕产妇、新生儿和儿科记录的无缝整合， 建立一个以人口为基础的区域围产期研究数据储存库或数据中心， 使用各个级别标识符或地理编码地址信息链接到辅助数据集;以及2） 调查影响疾病的怀孕前、怀孕期间和怀孕后的纵向寿命暴露 易感性和健康轨迹。我们解决了监管问题[机构审查委员会（IRB） 在辛辛那提儿童医院医学中心（CCHMC）和 辛辛那提（UC）医学中心]，建立正式的数据共享协议，并召集利益相关者 咨询委员会批准分发去识别数据集。我们收集了超过15万个 2013年至2018年出生的母亲和他们的婴儿来自CCHMC，Every Child Succeeds和UC Health这些 使用研究小组建立的自动化和验证算法对数据进行地理编码和链接， 技术细节和克服监管挑战的路线图概述了几个同行评审 出版物。多学科合作伙伴同样发表了使用寿命数据的研究结果 集成模块。一个研究小组利用该模块的地理编码功能实施区域级普查 新生儿监测代表宫内阿片类药物暴露率，新生儿戒断综合征， 和接触丙型肝炎另一项团队研究评估了新生儿中抗生素使用的趋势， 腹壁缺损对于CCTST 3.0下的生命周期数据集成模块的下一阶段，我们将： 1)通过整合来自其他分娩医院的电子健康记录，增加核心记录的数量 纳入人口动态统计记录; 2）通过纳入社会 决定因素、环境暴露和生物标本研究清单。因此，寿命数据 整合模块将继续通过参与额外的围产期研究工作， 多学科团队，无论是内部和外部的CCTST社区。

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.