Kudos to Paula Tanabe, PhD student La’Kita Knight and their entire team for the submission of their Bass Connections application entitled “Assessing Clinical, Environmental and Sociodemographic Factors in Children with Sickle Cell Disease.” This proposal requests funding for one-year with a start date of May 1, 2018.
Sickle cell disease (SCD) is a genetic blood disease and it is the most common hemoglobinopathy that affects 100,000 African Americans. Due to disease related complications, many SCD children experience neurocognitive deficits which result in poor academic performance, grade retention, high school dropout, limited higher education attainment and ultimately unemployment. The known structural factors that contribute to neurocognitive deficits in SCD are strokes and silent cerebral infarcts. These structural factors are not uncommon and result in neurocognitive deficits with lifelong implications for both children and adults. Until now, there has been little exploration of potential home environmental and other clinical factors that could directly affect neurocognitive functioning in children with SCD. Therefore, research is needed to investigate possible environmental factors that also contribute to neurocognitive deficits including lead exposures, nutrition and parent-child interactions in SCD children ages one month to five years old. Anticipated short-term outcomes from this pilot project are to explore feasibility of recruiting pediatric participants, abstracting electronic medical record data, conducting in home assessments as a new model of quality of care management, performing blood lead levels with point of care analysis and administration of neurocognitive functioning tools in a sample of young children with SCD. If successful, a long-term outcome will be to conduct a larger study and identify environmental predictors of neurocognitive functioning in young children with SCD. An understanding of modifiable risk factors associated with the development of neurocognitive deficits can lead to early screening and referral, in a clinic setting, for interventions that will prevent neurocognitive decline in children with SCD. Long term this work will led to improved childhood outcomes and overall quality of life for children with SCD.