Sickle cell disease: A global patient registry review

Abstract

Sickle cell disease (SCD) is one of the most common inherited diseases. This review identified and assessed key characteristics of the increasing number of SCD registries reporting patients data. Registries were identified through targeted searches. Registry publications/websites were assessed for availability of information on patient outcomes. Of 33 identified registries, 21 were still active. Data were available for demographics (97%), diagnosis/disease classification (91%), treatments (82%), hospitalization (52%), mortality (36%), comorbidities (36%) and quality of life (18%). Only three registries collected data on patient-reported outcomes (PROs), and only two on productivity loss. SCD registries are a valuable source of real-world information. There is a paucity of quality of life, patient-reported outcomes and productivity loss data.