IntroductionA growing population of adults living with severe, chronic childhood-onset health
conditions has created a need for specialized health care delivered by providers who have …

Background Sickle cell disease (SCD) and thalassemia are inherited blood disorders, which
can lead to life-threatening events and chronic organ damage. Recent advances in …

Hydroxyurea reduces pain crises, acute chest syndrome, and blood transfusions in sickle
cell disease (SCD), but potential detrimental effects on fertility and birth outcomes impede its …

Importance The hallmark of sickle cell disease (SCD) is vaso-occlusive pain that may be
acute and episodic or may progress to chronic, persistent pain with unpredictable and …

Purpose Patients with sickle cell disease (SCD) may experience sickle cell-related pain
crises, also referred to as vaso-occlusive crises (VOCs), which are a substantial cause of …

We conducted a multicenter pilot investigation of the safety and feasibility of bone marrow
transplantation (BMT) in adults with severe sickle cell disease (SCD)(NCT 01565616) using …

Background Providers and patients have called for improved understanding of the health
care requirements of adults with sickle cell disease (SCD) and have identified the need for a …

Importance Pain related to sickle cell disease (SCD) is complex and associated with social
determinants of health. Emotional and stress-related effects of SCD impact daily quality of …

Introduction Sex-based clinical outcome differences in sickle cell disease (SCD) remain
largely unknown despite evidence that female sex is associated with an increased lifespan …

Background The Patient Reported Outcomes Measurement Information System (PROMIS®)
has developed pediatric self‐report scales measuring several unidimensional health …