Sickle cell disease (SCD) is a genetic red blood cell disorder that results in the production of abnormal hemoglobin. Children with SCD are at risk for the development of neurobehavioral problems because of the impact the disease can have on the central nervous system.
Specific impairments in working memory are particularly prevalent in school-aged children with SCD. Working memory is more strongly associated with school readiness and academic success than intellectual ability in the general population.
The study has two parts:
- A 60 to 90 minute session at St. Jude during which the participant will complete working memory and school readiness tests and the parent will complete questionnaires.
- A 45 to 90 minute home visit to be scheduled within two months of the testing session at the participant’s convenience when both parent and participant are present for observation and interview.
During the testing session, the participant will complete tests of working memory and school readiness skills. During this time the caregiver, will complete questionnaires that ask about the participant’s developmental and medical history, behavior, level of independence, parent’s relationship with the participant, and information about the family.
- To study how working memory and school readiness skills in children with sickle cell disease differs from children who do not have sickle cell disease.
- To identify family and environment factors that may impact working memory and school readiness skills.
Eligibility criteria, among others, include:
- Participant is a St. Jude patient with a primary diagnosis of sickle cell disease.
- Participant is between the ages of 48 and 68 months, inclusive.
- Participant’s primary language is English.
- Participant has been treated with non-stimulant psychotropic medication.
- Participant is enrolled in kindergarten at time of assessment.
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The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.