Optimizing Neurodevelopmental Outcomes for Survivors with Congenital Heart Disease: Knowledge Gaps, Research Challenges and Opportunities

Lurie Children'S Hospital Of Chicago, Chicago IL

Investigators

Linked publications, trials & patents

Abstract

Project Summary/Abstract The objectives of this conference are to bring together cardiac neurodevelopmental research and clinical leaders, experts in quality improvement science and health disparities, and community stakeholders to explore and identify critical gaps in knowledge, research challenges/opportunities and promising prevention/intervention strategies for neurodevelopmental deficits among survivors with congenital heart disease (CHD). In the past three decades, the population of survivors with CHD has dramatically increased and significant neurodevelopmental and psychosocial deficits have become evident. These morbidities impact functional outcomes and health-related quality of life for children with CHD, and complicate or delay the transition to an independent adulthood. The National Heart, Lung, and Blood Institute, American Heart Association, American Academy of Pediatrics, and Adult Congenital Heart Association have all prioritized research to determine the prevalence and risks for neurodevelopmental and psychosocial deficits, their associated impact across the lifespan, and the development of interventions to mitigate these morbidities. This conference grant has been prepared in partnership with the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), a multi-center, interdisciplinary organization that aims to optimize neurodevelopmental outcomes for individuals with pediatric and congenital heart disease through clinical, quality, and research initiatives. In preparation for the conference, an interdisciplinary group of experts identified key domains crucial to advancements in cardiac neurodevelopmental care: 1) Fetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychosocial Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Family Stress and Coping, and 6) Neurodevelopmental Education, Outreach and Advocacy. Six working groups have been formed around these key domains and will meet concurrently during the conference to explore and identify critical gaps in knowledge, research challenges/opportunities and promising prevention/intervention strategies for neurodevelopmental deficits among survivors of CHD within each respective domain. A white paper deliverable detailing critical gaps in knowledge, research challenges/opportunities and priorities for the cardiac neurodevelopment research agenda will result directly from this conference.