Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade

Abstract Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD complicate the transition to independent adulthood. Risk neurodevelopmental is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, social factors, requiring multi-pronged approach neuroprotection intervention. To ensure future research can ultimately reduce burden individuals, families, society, most pressing issues in cardiac neurodevelopment scientific investigation must be identified. Through funding from an R13 Grant National Heart, Lung, Blood Institute Institutes Health United States America, Cardiac Outcome Collaborative convened two-day meeting international experts research, clinical care, health disparities, including patient family stakeholders, define outcomes agenda next decade. Seven multidisciplinary working groups were formed address key domains crucial advancement research: 1) Foetal Brain Development Neuroprotection, 2) Surgical/Perioperative Neuroprotection Neurodevelopment, 3) Characterization Psychological Outcomes, 4) Psychosocial Intervention, 5) Parent Mental Family Functioning, 6) Education, Outreach Advocacy, 7) Disparities Outcomes. Working identified significant gaps knowledge critical questions that answered further knowledge, policy, outcomes. The development informing collaborative initiatives allocation inquiries highest value stakeholders.