TY - JOUR AU - Burke, Tom AU - Asghar, Sohaib AU - O’Hara, Jamie AU - Sawyer, Eileen K. AU - Li, Nanxin PY - 2021 DA - 2021/03/20 TI - Clinical, humanistic, and economic burden of severe hemophilia B in the United States: Results from the CHESS US and CHESS US+ population surveys JO - Orphanet Journal of Rare Diseases SP - 143 VL - 16 IS - 1 AB - Hemophilia B is a rare congenital bleeding disorder that has a significant negative impact on patients’ functionality and health-related quality of life. The standard of care for severe hemophilia B in the United States is prophylactic factor IX replacement therapy, which incurs substantial costs for this lifelong condition. Accurate estimates of the burden of hemophilia B are important for population health management and policy decisions, but have only recently accounted for current management strategies. The ‘Cost of Severe Hemophilia across the US: a Socioeconomic Survey’ (CHESS US) is a cross-sectional database of medical record abstractions and physician-reported information, completed by hematologists and care providers. CHESS US+ is a complementary database of completed questionnaires from patients with hemophilia. Together, CHESS US and CHESS US+ provide contemporary, comprehensive information on the burden of severe hemophilia from the provider and patient perspectives. We used the CHESS US and CHESS US+ data to analyze the clinical, humanistic, and economic burden of hemophilia B for patients treated with factor IX prophylaxis between 2017 and 2019 in the US. SN - 1750-1172 UR - https://doi.org/10.1186/s13023-021-01774-9 DO - 10.1186/s13023-021-01774-9 ID - Burke2021 ER -