OBJECTIVES

Patient registries can be a good source of evidence for health-care providers, payers and regulators requiring real-world data for evidence-based decision-making. This review aimed to identify and assess key characteristics of sickle cell disease (SCD) registries across the globe reporting patients’ data.

METHODS

SCD registries were identified through targeted searches (no date restrictions applied) of the ClinicalTrials.gov, European Directory of Registries, Orphanet, and PubMed databases. Registry publications and websites were assessed for availability of information on patient characteristics (including comorbidities), diagnosis and disease classification, mortality, treatments, hospitalizations, and funding agency.

RESULTS

Of twenty-two identified registries reporting data for SCD patients, 15 were active. Twenty-three percent of registries were multinational while 77% were national-level. National registries were most commonly found in the USA (n=9) and Spain (n=4). Number of included patients varied from 62 to 102,163, while data collection varied from one to 99 years. Data were available for demographics, diagnosis/disease classification and treatment (77% of registries each), hospitalizations (50%), and comorbidities and mortality (41% each). One registry each collected data on quality-of-life, patient-reported outcomes, and productivity losses. Eighty-two percent of registries were initiated during the last 10 years, of which 22% were industry-funded. Eighty-three percent of registries initiated during the last 10 years are still known to be active.

CONCLUSIONS

SCD patient registries are a good source of real-world information; a rise in the number of industry-funded registries during the last 10 years indicates increased interest of stakeholders in the data. There is paucity of quality-of-life, patient-reported outcomes, and productivity losses data.