Estimation of impact of RPE65-mediated inherited retinal disease on quality of life and the potential benefits of gene therapy
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Recently co-authored the first study to report HRQL weights (utilities) for health states in inherited retinal dystrophy patients, corroborating substantial impact of vision loss on HRQL.
Background/aims In rare diseases, health-related quality of life (HRQL) data can be difficult to capture. Given the ultrarare nature of RPE65 -mediated inherited retinal disease (IRD), it was not feasible to recruit a patient sample and collect HRQL data prospectively. The objectives of this study w…
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