IRD COUNTS – the impact of inherited retinal degenerations
IRD COUNTS is a consortium of patient organisations and industry partners working to establish the prevalence, burden and impact of inherited retinal dystrophies (IRDs) within the UK and Republic of Ireland. Patient organisations include Fighting Blindness, Retina International, Retina UK and the Thomas Pocklington Trust Foundation while Roche, Novartis, MeiraGTx and ProQr respresent the industry partners.
Given the rarity of these conditions, data regarding the prevalence of IRDs, impact on the individuals and families affected, and the cost burden to economies is lacking. This hinders development and progress of research, the commissioning of clinical services and treatments, and the planning and implementation of clinical treatment trials.
Addressing this knowledge gap, IRD COUNTS aims to better understand the real impact of living with an inherited retinal degeneration.
The final report was published in September 2019. It concludes that inherited retinal dystrophies (IRD) imposed significant economic and well-being costs on the population of the Republic of Ireland in 2019. Currently, persons living with an IRD incur significant economic costs and reductions in their quality of life.
In addition, their families, friends, government, employers and society all incur significant economic costs due to IRDs. Total costs attributable to IRDs in the Republic of Ireland were estimated to be €49.5 million in 2019, comprising both economic (€33.5 million) and well-being costs (€16.0 million).
Well-being costs comprised the largest share of total costs at €16.0 million (32.3%), followed by productivity costs (€9.4 million, 18.9%), dead weight losses (€8.2 million, 16.6%) other costs (€7.0 million, 14.2%) and informal carer costs (€6.7 million, 13.6%).
This means that in addition to imposing significant economic costs, IRDs result in pain and suffering that leads to a significant well-being impact for persons living with an IRD. Individuals the largest share of total costs at 51%, followed society/other (17%), family/friends (16%), government (12%) and employers (4%).