Educational Attainment in Sickle Cell Disease

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DESCRIPTION (provided by applicant): The purpose of this proposal is to support the applicant in becoming an independent clinical investigator with expertise in improving educational attainment in children with sickle cell disease (SCD). The applicant will collaborate with her mentor and the multi-disciplinary SCD stroke research team at Washington University School of Medicine. The SCD stroke research team coordinates the 24 site multi-center Silent Infarct Transfusion Trial (SITT), and the applicant is the local principal investigator. She will gain experience with both her existing independent pilot trial and her investigator-initiated ancillary studies to SITT. These activities will provide a rich environment for conducting patient-oriented research and developing the skills for independent clinical investigation. Cognitive deficits and poor academic attainment are major barriers to independence in students with SCD. Over 40% of students with SCD will fail a grade or receive special education, and approximately 15% will graduate from high school in four years. This proposal will include three studies. The first study will expand her pilot trial for education rehabilitation in students with SCD and strokes to include students with SCD and significant memory deficits (> 1 SD below the age expected mean)(n=30). Each student will be randomized to receive two years of either tutoring or tutoring plus memory training skills to test the following hypothesis: An education rehabilitation program for students SCD and cognitive deficits is feasible, measured by > 80% of the students completing the program. A secondary analysis will be performed to determine the efficacy of the rehabilitation program on memory measures. The applicant has initiated two ancillary studies in SITT. The following hypothesis will be tested in students with sickle cell anemia (SCA) screened for silent cerebral infarcts: In students with SCA, a lower SES will result in a lower educational attainment than students with a high SES and SCA. The second ancillary study will test the following hypothesis in students with SCA who are randomized to either transfusion therapy or observation for three years: Students with SCA and silent strokes who receive blood transfusion therapy will have an improvement in their academic achievement when compared to students with silent strokes who are not transfused. The knowledge and skills acquired from completing these studies will allow the applicant to develop evidence based strategies to improve educational attainment in students with SCD.