Stillbirth Research Consortium Data Coordinating Center - Modified Project Summary/Abstract Section To reduce the unacceptably high burden of stillbirth in the United States, NICHD is establishing a collaborative Stillbirth Research Consortium to support cutting-edge basic, translational, clinical and data sciences stillbirth research. The Data Coordinating Center (DCC) will play a critical role to support the research centers’ collaborative efforts. As the proposed Consortium DCC, RTI International brings stillbirth, data science, statistical and project management expertise to the Consortium in addition to experience working with large national datasets which can augment the smaller research studies. RTI will facilitate planning of harmonized stillbirth research across the Consortium, including establishing a biorepository that serves the Consortium. RTI will facilitate the overall success of the Consortium through achieving the specific aims. Aim 1: Provide analytic and logistical leadership for the Consortium and facilitate regular communication and coordination among the research centers. RTI will establish systems and facilitate communication among the Consortium members at a routine cadence to effectively support priorities. Aim 2: Facilitate development and implementation of common projects and ensure high quality and consistency of study data by supporting use of common data elements, standard measures, and uniform data collection across research centers. To ensure high impact, RTI understands the importance of harmonized data standards. A flexible approach will support local research needs while also ensuring harmonization. Aim 3: Build novel informatics infrastructure and pipelines to gather and store de-identified patient-level data and monitor data to identify and address potential biases in data collection and analyses. RTI will provide the Consortium with a secure informatics infrastructure built on Findable, Accessible, Interoperable, and Reusable (FAIR) data principles to facilitate successful data capture, high-quality data harmonization, and data migration to a common repository facilitating cross-site integrated data analyses. Aim 4: Advance the scientific and clinical impact of the Consortium by conducting cutting-edge data analyses and using communication science best practices to share research findings and serve as a resource for the stillbirth research community. RTI will utilize user-centered approaches to translate research into materials for the stillbirth-affected community, researchers, practitioners, and others to maximize the impact of stillbirth-relevant research across the United States to decrease the incidence of stillbirth.
