Gene therapy in sickle cell disease: Attitudes and informational needs of patients and caregivers.
Akshay SharmaAmanda YoungYvonne CarrollHimani DarjiYimei LiBelinda N MandrellMarquita N NelsonCurtis L OwensMary IrvineMary CaplesLauren P JerkinsYoram UnguruJane Silva HankinsLiza-Marie Marie JohnsonPublished in: Pediatric blood & cancer (2023)
Given that very few patients with SCD feel knowledgeable about GT and a majority have neutral feelings about the safety and utility of this new approach, culturally appropriate patient-centered education is urgently needed as these treatments get regulatory approval and proceed to the clinic.