How is data helping to advance the understanding and treatment of vision loss?

Accessing and understanding large datasets reveals patterns that can advance understanding of eye conditions and spark major breakthroughs.

From eye health to wider public health, the projects we fund turn data into hope, insight, and better care.

Here are seven examples of how data-driven research is already shaping a brighter future for everyone affected by vision loss.

7 ways data can advance our understanding of eye diseases and deliver better treatments

1. SCONe Project — One Million Retinal Scans and Counting

Pronounced ‘scoon’, the SCONe Project, led by researchers at the University of Edinburgh and Glasgow Caledonian University, is one of our most ambitious projects.

The team has captured one million retinal images — building a vast, anonymised databank of eye scans for research. 

It matters because our eyes can be a window not only to eye disease, but to other critical health conditions — from cardiovascular disease to dementia.

With advances in artificial intelligence (AI) for medical image analysis, this treasure trove of data could help clinicians spot illness earlier, improve diagnoses, and reshape how we screen for eye and general health problems. 

2. What is the role of mitochondria in glaucoma

Researchers we have funded use the TwinsUK registry to advance their understanding of eye conditions.

For example, together with the Royal College of Ophthalmologists, we’re co-funding Dr Abdus Samad Ansari of King’s College, London, to explore the role of mitochondria in the eye and how they may affect a person’s susceptibility to glaucoma.

Mitochondria are the ‘powerhouse of cells,’ giving them energy. Changes in the number or function that occur with ageing are connected with several age-related diseases, including glaucoma. Using the Twins UK cohort and funded by our early career award.

Dr Ansari will be among the first to examine mitochondrial dysfunction in a healthy population over time. He will study identical and non-identical healthy twin pairs and test how mitochondrial function is related to age-related changes in the body.

What is the Twins UK registry?

Twins UK is the UK’s largest twin registry and “the most clinically detailed in the world”. The registry has over 15,000 identical and non-identical twins from across the UK, aged between 18  and 100.

It enables scientists to research health and ageing longitudinally and stores over 700,000 biological samples, with data collected on twins with repeat measures at multiple time points.

4. What is the link between gut microbiomes and age related macular degeneration?

One of the most exciting frontiers of eye research is understanding how general health — including gut health — may influence vision. 

Through our Small Grant scheme (in partnership with the Royal College of Ophthalmologists), we’ve supported a study investigating links between the gut microbiome and Age‑Related Macular Degeneration (AMD). 

Using data from imaging (macular scans) and biological samples, the research promises fresh insight into AMD’s causes — and perhaps new ways to prevent or treat it by looking beyond the eye.

The research may help researchers better understand the disease and develop new treatments.

The study will use macular optical coherence tomography (OCT) scans of twins to produce detailed, high-resolution images of the macula that reveal changes associated with age-related macular degeneration.

5. How can mapping population data help us to advance our understanding of hearing and vision loss across the UK?

Long-term resource planning is crucial for the longevity of free healthcare across the UK, including eye health.

Alongside charitable partners and the public sector, we have helped fund the UK National Eye Health and Hearing Study (UKNEHS) to deliver high-quality data on hearing loss and eye health in the UK.

The UKNEHS gathers large-scale, population-level data on eye health and hearing across the UK. The project aims to understand how many people live with undiagnosed visual or hearing impairment — and why. 

That baseline data is vital. It helps us spot regional differences, understand barriers to care (like access to eye tests), and plan services more effectively. In short: data from everyday lives, helping shape fairer, more effective public health for all. 

The aim is to measure undiagnosed ocular disease and/or hearing loss, barriers to care uptake, and to test the uptake and effectiveness of remote sensory measurement technologies.

The resulting data will help plan future services and improve outcomes. The study will gather data from all four nations and measure 25,000 people. It has a focus on digital transformation and four key objectives:

• Effectiveness,
• Efficiency,
• Economy,
• Compliance

Anglia Ruskin University is developing the project, led by Chief Investigator Rupert Bourne, Professor of Ophthalmology at Anglia Ruskin University, Cambridge and Consultant Ophthalmic Surgeon at Cambridge University Hospital.

Other partners include The College of Optometrists, Vision UK, the Thomas Pocklington Trust, the Royal College of Ophthalmologists and several other partner organisations across the eye health and hearing sector.

Read more

6. RP Genome Project

Fight for Sight helped fund the RP Genome Project led by Retina UK. It is also called the UK Inherited Retinal Dystrophy Genome Project.

Co-ordinated by Professor Graeme Black at the University of Manchester, the project brings together the UK's four largest IRD research groups: the University of Leeds, London’s UCL Institute of Ophthalmology, Manchester Royal Eye Hospital and Oxford University Eye Hospital.

One of the project’s core aims is to develop a confidential database of patients with a known genetic cause to make it easier to recruit for clinical trials.

7. Database of features of normal blood flow

Dr Adam Dubis from Moorfields Eye Hospital NHS Foundation Trust aims to study the normal way the blood vessel system is regulated, which will help identify any abnormal changes in vascular disease. Funded by a Small Grant from us, he will use cameras that can visualise the smallest capillaries, vessel walls and identification of individual cells moving through the vessel.

He will develop a database for typical eye blood flow features using this camera. The database will include information on the density and arrangement of blood vessels, maps of blood flow rate by vessel size and how quickly and magnitude of blood flow increase in response to visual stimulation.

The database will define a range of healthy blood flow which means that abnormal blood flow could be determined. This information could improve diagnostic markers, treatment targets, and patient management.

Useful information

• For information about specific eye conditions, please see our A to Z of eye conditions.
• Want to know more about the research we’re funding? You can use our online database of plain language summaries to find out more.
• Our Family Funds raise money around specific eye diseases.