Inherited retinal diseases (IRDs) are a heterogenous group of visually debilitating diseases caused by pathogenic variation in retinal function proteins. The majority of IRDs is characterized by retinal degeneration, which can lead to significant vision impairment and blindness. Collectively, IRDs are estimated to affect over 2 million people worldwide with considerable societal impact.

OBJECTIVES: This research aims to estimate the economic burden of disease of IRDs in the Netherlands.

METHODS: A cost-of-illness (COI) study was conducted to quantify the economic burden of IRDs on society. The inputs were collected by a targeted literature review and patient survey (n=80). A prevalence-based approach was taken within an annual time frame for the 11 most prevalent IRDs in the Netherlands.

RESULTS: The IRDs prevalence was estimated to be 0.03% of the adult population, which represented 5,186 cases in 2023. The annual total cost of the included IRDs in the Netherlands is estimated to be €155.7 million, equating to € 30,023 per person with an IRD per year. The largest cost component is indirect non-healthcare costs (€ 121.5 million), followed by direct healthcare costs (€25.4 million) and, lastly, cost of direct non-healthcare costs (€8.8 million).

CONCLUSIONS: In addition to the humanistic burden of disease, this study also demonstrates a substantial economic burden of IRDs in the Netherlands, mainly due to the current lack of effective treatments for the vast majority of IRDs. Furthermore, the chronic nature of IRDs affects patients to also require considerable informal care, often by family and friends. Therefore, it is important to consider the societal impact of these conditions in decision-making and policies for the Netherlands, as well as to continue investment in research and development. Such investments may eventually alleviate the financial burden on society and enhance the well-being and productivity of IRD patients and their caregivers.