Pediatric Heart Network Joint Heart Program Consortium

This application represents a new Clinical Research Center consortium that will strengthen the Pediatric Heart Network. Over the last seven years, Cincinnati Children’s (CCHMC) and the University of Kentucky (UK) have built The Joint Pediatric and Adult Congenital Heart Program, a collaborative “one program, two site” model of care within our distinctive region of the United States. The clinical program spans areas of Ohio, Kentucky, Indiana, and West Virginia which includes a large portion of Appalachia. Our population experiences significant health outcome disparities with the rural and remote members of our communities often most affected. Such disparities are seen daily in our clinics and inpatient units, motivating this application. During the time our clinical program has matured, CCHMC has been a highly productive member of the Pediatric Heart Network and the National Heart Lung and Blood Institute’s Bench-to-Bassinet program, bringing experience that will facilitate the integration of this consortium into the PHN. The Joint Heart Program’s large, combined clinical volume of patients will strengthen the previously outstanding enrollment of the CCHMC site. Our current role as vascular and MRI core lab, and single IRB for the Network, bring added value. Important to the next iteration of the PHN, the Joint Heart Program has prioritized data science and data integration, partnering with broader institutional resources to enable transdisciplinary research that generates new understanding of health and disease while informing novel therapies that improve clinical outcomes for all affected patients and families. Furthermore, the Joint Heart Program will bring diversity to the research through the following: 1) program structure with institutional partners of different size and perspective, 2) a clinical population that is includes a rural and remote population often not involved in such research, 3) institutional commitment, existing infrastructure, and local expertise to develop partnerships with underrepresented and special populations in our region. The latter is enabled by extensive community engagement resources and research outreach capacity supported by two CTSAs with an established collaborative regional relationship. In Aim 1, we will accelerate scientific discovery and improve clinical outcomes by leveraging our proven expertise in multicenter research, data science, and data integration including pediatric learning health networks, clinical registries, and large translational datasets. In Aim 2, we will reduce inequity in outcomes for CHD and childhood acquired heart diseases by fostering diversity of both research teams and participants. In Aim 3, we will cultivate a new generation of pediatric and adult congenital researchers through a strong transdisciplinary training platform that emphasizes diversity and inclusion within mentors and mentees. We are eager to collaborate with the clinical centers, data coordinating center, NHLBI staff, industry partners, and broader CHD and acquired pediatric heart disease communities to address the most important problems facing affected children and their families.