Research on inherited retinal disease has provided updated estimates of how many people are living with these conditions across the UK. These estimates have now been incorporated into the Sight Loss Data Tool, helping to strengthen the available evidence on these eye conditions and the support for people affected by them.
About the study
Inherited retinal dystrophies are a group of rare genetic eye conditions that can cause progressive sight loss. This includes Retinitis Pigmentosa, Usher Syndrome, Stargardt Disease and more. Although each condition is rare, together they affect a larger number of people across the UK.
The new estimates are based on evidence brought together in a review of the prevalence and wider impact of 10 inherited retinal diseases in the UK and the Republic of Ireland.
Given the limited availability of prevalence data, the study presents both a main estimate and an upper estimate. This reflects uncertainty in the evidence, including known challenges in timely diagnosis and incomplete data. As a result, the true number of people living with inherited retinal conditions may be higher than routinely captured in existing data sources.
Key findings
- Around 21,700 people are living with inherited retinal conditions in the UK.
- There’s an upper estimate of around 36,700 people, reflecting the uncertainty in available prevalence evidence.
- Main estimates suggesting around 18,400 people in England, 1,740 in Scotland, 1,000 in Wales and 600 in Northern Ireland are living with inherited retinal eye conditions.
How the Sight Loss Data Tool helps
The Sight Loss Data Tool now includes updated inherited retinal eye conditions prevalence estimates based on this evidence. This gives users access to clearer, more consistent figures on the scale of inherited retinal disease across local areas in the UK.
By combining these estimates with other eye health and sight loss data, users can build a broader picture of need in their local area and understand how different types of sight loss affect local populations.
Good quality evidence is essential for planning services, informing policy and supporting better outcomes for people living with sight loss. In particular, stronger prevalence data for inherited retinal conditions can help ensure that rarer conditions are better recognised in decision-making.
The addition of these estimates strengthens the overall evidence base in the tool and supports better understanding of a group of conditions that have lifelong effects on individuals and families.
More information
The full study, The Impact of Inherited Retinal Diseases in the Republic of Ireland and the United Kingdom from a Cost-of-Illness Perspective, is available through the Clinical Ophthalmology journal website.
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