In 2010, analysis of the Dallas Newborn Cohort established a new reality for sickle cell disease (SCD): more than 90% of affected infants born after 1983 survive to adulthood.1 Survival, the evidence showed, occurred with interventions to prevent sepsis, acute chest syndrome, stroke and untimely death. This evidence propelled the contemporary model of comprehensive pediatric SCD care. Yet as pediatric SCD care organized and outcomes improved, care for adults with SCD is still organizing and often reactive. The grim reality is that in the US, as young adults with SCD age out of pediatric care, they are at increased risk of death.2 In this setting, it is perhaps understandable that there is a pediatric-heavy research focus on how to best support and prepare young people with SCD in their transition to adult care.
