Revamp of UK-wide research tool could transform care of rare eye conditions

29 February 24

written by:

Eva Astreinidou

(more articles)

A picture collage of two Fight for Sight researchers
BOSU leads Barny Foot and Professor Jugnoo Rahi

A newly revamped UK-wide research platform could be the key to understanding, preventing, diagnosing and eventually treating rare eye diseases. 

The British Ophthalmological Surveillance Unit (BOSU) enables investigators to identify patients newly diagnosed with specific rare eye conditions through a monthly reporting (active surveillance) system involving all senior ophthalmologists all across the UK.

Founded 25 years ago, BOSU was until now a postal-based report card system, with data collection relying on postal distribution and the return of paper questionnaires.

With recent funding awarded from Fight for Sight, BOSU will transform into a new integrated digital system, which will be more reflective of the changing digital landscape in healthcare, the changing framework post-GDPR, and will be a more efficient system in a post COVID-19 world.

The inclusive collaborative platform allows for standardised data collection for studies that will inform clinical practice, policy or enable key research in which all NHS ophthalmologists can participate – bridging a major gap between medical research and clinical practice.

It also allows for rapid intelligence gathering and increases awareness around the impact of rare eye disorders, such as birdshot retinopathy, infantile glaucoma, ocular Behcets disease, early-onset corneal dystrophies, inherited retinal dystrophies, and many other conditions.

How it all began

BOSU is internationally recognised as the world’s only nationwide surveillance unit for epidemiological research into uncommon eye conditions. Since 1997, the BOSU has supported 84 studies leading to 81 published papers.

Independent researchers – often junior ophthalmologists supported by their trainers - submit applications which are assessed by the BOSU Executive Committee against criteria including potential impact on patient care as well as rarity (up to 300 new cases a year) and public health importance.

Thanks to strong engagement and involvement from ophthalmologists across the UK, who have reported cases for inclusion in studies and provided data about them, research through BOSU has transformed knowledge and practice in many areas.

For instance, The British Childhood Visual Impairment and Blindness studies in 2000 and 2015- the only such studies anywhere in the world - provided information for monitoring trends over time in frequency and causes of childhood blindness, helping to identify the impact of new treatments and national screening programmes, the changing landscape of child health, and the considerable inequalities in visual health by ethnicity and social class.

Another study which investigated delays in diagnosis and treatment has provided the evidence base for campaigns and actions to increase provision of ophthalmic care. Upcoming studies of adverse outcomes due to delays in treatment during the pandemic will be used to inform the reconfiguration of services to address the backlog in NHS Ophthalmology services.

Continuing support for BOSU in 2024

Launched today, on Rare Disease Day, Royal College of Ophthalmologists is matching Fight For Sight funding that will support BOSU for the next five years.

This award from Fight for Sight builds on our backing of the BOSU for more than a quarter of a century with both core funding and support for research bursaries. In 2020 our funding helped facilitate the switch from paper reporting to the new integrated digital system that allows 2,450 UK ophthalmologists to contribute to the research of conditions and events with high importance to health of the public and implications for service provision or policy.

Since it started in 1997 the BOSU has facilitated 87 different completed studies, resulting in more than 90 peer review publications, and 200 conference presentations. It has studied conditions including childhood blindness, ocular trauma and acute retinal necrosis leading to significant changes in practice and knowledge.

Jugnoo Rahi, chair of the College’s Academic Research and Innovations committee, said: “The generous support of Fight for Sight will allow BOSU to continue to facilitate high quality clinician-led research that saves sight and improves clinical care. The UK ophthalmology community should be proud of the collaborative spirit that underpins BOSU.”

Crown jewel in UK ophthalmic research

Keith Valentine, Chief Executive at Fight for Sight, said:

“BOSU is one of the jewels in the crown of UK ophthalmic research. It is the long-awaited step-change we needed in bridging the gap between medical research and clinical care for rare eye conditions. We are so pleased to be part of the transition into something that is already world leading and now fitting for the 21st century. Ophthalmology provides the largest outpatient service of all specialties in the country, so this could be truly transformative in finding improving treatments for rare conditions and improving care. We are excited by all the potential findings and discoveries that the new system could bring about.”