Timeliness of Confirmatory Testing for Sickle Cell Disease

2. The percentage of children whose confirmatory testing results were communicated to their families by 4 months of age. In children with SCD, illness and death can be reduced through early diagnosis, treatment of complications, systematic follow-up, and patient/parent education. In particular, timely confirmatory testing and prompt communication with families are steps that pave the way for initiating simple but life-saving treatments in young children with SCD. Neonatal screening for SCD is mandatory in the United States, but data are scarce that describe the proportion of children who receive confirmatory testing and the proportion of families who learn the results of that testing. This measure would highlight gaps where providers or health systems are falling short and encourage early and consistent treatment for all young children with SCD.