The socioeconomic impact of inherited retinal dystrophies (IRDs) in the United Kingdom.

In 2019, IRD COUNTS – a patient led multi-stakeholder consortium managed by Retina International, engaged Deloitte Access Economics to estimate the disease burden and economic impact of Inherited Retinal Dystrophies (IRDs) in the Republic of Ireland (RoI) and United Kingdom (UK) from a societal perspective – a cost-of-illness study. This approach involved estimating the number of people with IRDs in a base period (2019) and the costs attributable to IRDs in that period.

This pilot study relates exclusively to ten forms of IRDs: Retinitis Pigmentosa, Usher Syndrome, Stargardt Disease, LCA/EOSRD, Best Disease, Cone Dystrophy, Cone-Rod Dystrophy, Achromatopsia, Choroideremia and X-Linked Retinoschisis.

The study shows that in both the ROI and UK the impact on the wellbeing and productivity of the affected individual and their families was significant.

Published: Retina International, August 2019