Inherited retinal diseases place a significant burden on society beyond the healthcare system, according to a study published in Orphanet Journal of Rare Diseases. Qin Xiang Ng, MD, and colleagues conducted a literature review that included nine studies. The researchers standardized costs to US dollars for cross-country comparison. Patients in Singapore incurred an average annual total cost of approximately $6,926, while patients in Japan accrued a total yearly cost per patient of $20,833. In the UK, expenses ranged from $21,658 to $36,549 annually for patients with IRDs. Patients in the US showed varied IRD-related costs of approximately $33,017 to $186,051 per year per patient. Canadian patients faced total costs ranging from $16,470 to $275,045 annually. Non-healthcare expenses accounted for the most costs—87% to 98% of the total—attributed to factors like reduced QOL, financial hardship, and heightened demand for informal caregiving. According to the researchers, investment in IRD research is crucial in assessing the cost-effectiveness of future IRD treatments, such as genomic testing and tailored therapies.
