Retina International is delighted to announce the publication of our latest study, “Prioritising the Burden of Geographic Atrophy and Treatment Expectations: A Modified Nominal Group Technique Study with International Patient-Led Organisations,” in collaboration with patient leaders and researchers.
Geographic atrophy (GA), an advanced form of dry age-related macular degeneration, affects more than 5 million people worldwide and leads to progressive, irreversible vision loss. Our study gathered the voices of international patient-led organisations to better understand the true impact of GA on daily life and to define what outcomes matter most to patients when considering future treatments.
Participants identified loss of independence, difficulty recognising faces, challenges with daily living, and the emotional toll of GA as the most significant burdens. When asked about treatment expectations, they prioritised stability of vision, the ability to recognise faces, and convenient treatment options such as one-time therapies. Our study found that psychosocial and low-vision support are important considerations for patients.
This research highlights the importance of ensuring that patient perspectives shape the future of GA care and the critical role of patient-reported outcome measures (PROMs) in assessing the true value of emerging therapies. It demonstrates the unique role Retina International plays in giving voice to those living with retinal conditions and ensuring their priorities are understood by researchers, clinicians, and policymakers worldwide and that outcomes reflect not just changes in clinical indicators, but also the lived experiences and priorities of patients.
Building on this work, we have initiated our Mental Health Study. Retina International aims to make psychosocial support as central to eyecare as genetics and diagnostics. Our study is a patient-led initiative spanning the USA, UK, Ireland, South Africa, Australia, and New Zealand. It is designed to understand the psychological burden of inherited retinal degenerations (IRDs), including anxiety, depression, and suicidal ideation, as well as the factors associated with these challenges.
With policy-ready outcomes, the study will inform support services, clinical care, and employer accommodations. Future phases will expand to underrepresented regions and minority communities. We are using large data sets and validated questionnaires to further assess the impact of retinal degenerative diseases, including GA, on the mental well-being of both affected individuals and their caregivers.
We are proud to share this achievement and our future plans in driving patient-centred health innovation with our members and partners, whose continued support makes this work possible.
Together, we are ensuring that patient perspectives remain at the heart of innovation in eye health.
Access the full study here online and in print in the journal Clinical Ophthalmology (Dove Medical Press), Volume 2025:19, Pages 3317-3329.
