Children with complex congenital heart disease (CHD) are at increased risk for neurodevelopmental problems and later cognitive and behavioral problems, even in the absence of early delays. Children who require surgery within the first year of life are at particularly high risk for later difficulties. Utilizing clinical data collected through our research projects and our neurodevelopmental follow-up clinic, Healthy Hearts and Minds, we are investigating several neurocognitive and social-emotional/behavioral domains to better understand the brain-behavior connection for this population.
Our current projects focus on the following areas:
- Neurocognitive profile. For children with CHD, there is an increased prevalence of challenges at school age. Including differences in attention and executive functioning, academic skills, visual problem solving, and motor skills.
- Longitudinal outcomes. Tracking cognitive and social-emotional/behavioral functioning from early childhood through young adulthood to help identify possible predictors of later development.
- Adaptive functioning/daily living skills.
- Academic supports and services.
- Social communication and autism spectrum disorders.
UCSF is also a member site of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), a multidisciplinary, multinational group that is working to optimize neurodevelopmental outcomes for children with congenital heart disease through clinical, quality, and research initiatives. We contribute clinical data to the CNOC Clinical Registry allowing us to participate in research initiatives targeting understanding neurodevelopment in children with CHD on a large multi-center scale. More information regarding CNOC, can be found on their website, CNOC.