Pediatric Heart Network (PHN) - Utah Center

PROJECT SUMMARY/ABSTRACT Utah has been one of the most productive Core Clinical Research Centers in the Pediatric Heart Network (PHN) since its inception in 2001 and has supported the mission to improve health outcomes for individuals with congenital (CHD) and pediatric acquired heart disease, disseminate collaborative findings, train and

educate new investigators, and provide support and advocacy for families during the conduct of excellent, ethical clinical research. During the current funding cycle, PHN Utah implemented a leadership transition plan with the next generation of locally and PHN trained researchers joining senior investigators with >20-years of

PHN experience. They led 6 studies and made substantial contributions to PHN scientific discoveries and administrative activities. Recruitment and retention of participants was among the highest of all centers due to the committed, diverse PHN Utah team with 24-hour coverage to approach every eligible patient. The long-

standing collaborations among Utah investigators, planned leadership transition, and continued strong institutional support will allow a seamless transition into the next cycle. Going forward, the increasing diversity of the Intermountain West will provide unique access to participants unrepresented in research: rural and

frontier populations, Native American/Alaska Native, and Native Hawaiian/Pacific Islander communities. PHN Utah is ideally positioned to contribute to a more equitable, diverse, and inclusive PHN focused on addressing health care inequities and the 2 specific pillars to support transformational impact: 1) addressing existing

inequity in clinical outcomes and 2) big data/data science using existing infrastructure. PHN Utah will expand their successful collaboration with Utah’s Pediatric Cardiac Genomics Consortium to develop a robust mechanism for extracting and sharing pertinent, machine-readable clinical data from Electronic Health Records

across all PHN sites and use a robust Artificial Intelligence platform to explore the complex interplay between phenotype; genotype; maternal, clinical, social determinants of health (SDOH), and racial/ethnic factors; and clinical outcomes. Our aims are to 1) enhance PHN Utah’s exemplary performance and leadership by building

on prior experience with a new vision and additional expertise and infrastructure informed by lessons learned from PHN leadership roles, collaborations, and studies, 2) address EDI issues in all aspects of research and training to amplify successes in mentoring the next generation of researchers in an increasingly diverse and

inclusive research environment, and 3) create the PHN Data Resource consisting of clinical, genomic, and SDOH data to empower equitable, personalized outcomes prediction. PHN Utah is committed to the overall mission of the PHN, has a proven track record of contributions to the success of the PHN, effective leadership

locally and within the PHN, strong institutional support, proven mentorship of the next generation of physician scientists, and will add significant resources to address equity and diversity, and provide existing infrastructure to support a big data approach to personalized medicine.