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Cost model estimates higher societal costs for XLRP linked to disease severity and caregiver impact.
Our UK-focused cost model demonstrates that the societal costs associated with XLRP tend to be higher in patients with more severe disease and are driven primarily by considerable opportunity costs for caregivers and productivity losses for patients. Health care resource use has little impact on the total cost. With no treatment currently available for XLRP, the high economic burden of the disease rests not with health care payers but mainly with patients and their caregivers.
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Denee et al. (2026) studied this question.
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