(SCANS) Sickle Cell Anemia Neurodevelopmental Screening - Mentoring and Research in Patient Oriented Research

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Sickle cell disease (SCD) is an inherited hemolytic anemia associated with under-recognized developmental delay and cognitive deficits. Chronic anemia, low oxygen saturations, sleep- disordered breathing, cerebral infarcts, and low socioeconomic status are risk factors for clinically significant cognitive impairments. However, SCD can be an invisible disability. Patients’ development is not routinely screened and deficits may remain undiagnosed. Early childhood is the most important time to screen for delays because children can receive evidence-based and federally mandated resources to remediate development before entering school. Without such resources, this vulnerable population has a high probability of poor academic attainment, unemployment, and incarceration. The long-term goal of the current project is to prepare young children with SCD for early childhood education and sustained academic success. To achieve this, Dr. King proposes to study the implementation of developmental screening of young children with SCD, a typically overlooked population. Dr. King is the principal investigator of a U01 grant in the Sickle Cell Disease Implementation Consortium to provide cognitive screening and intervention for adolescents with SCD. She leads a team of hematologists, a neuropsychologist, a social psychologist, occupational therapists, and implementation scientists to both conduct interventions and study the implementation science outcomes in order to “scale up” evidence-based practices. She will use this established infrastructure to complete the following aims: Aim 1. To determine the barriers and facilitators of surveillance and screening of early childhood development of children with SCD age 0-3 years, and Aim 2. To identify specific implementation strategies to address the barriers and facilitators to early childhood development screening. The results will inform the appropriate intervention to improve developmental screening in children with SCD. This proposal will enhance Dr. King’s career by allowing her to gain the necessary skills to recruit, educate, and mentor a cadre of health professionals focused on implementation science for improving clinical and educational outcomes in SCD. Dr. King has a long track record of mentoring students, trainees, and junior faculty from multiple scientific disciplines including medicine, public health, psychology, education, and occupational therapy. She has a particular interest in mentoring underrepresented minorities, and she will continue to do so to develop future leaders.