Advancing Research. Amplifying Patient Voices. Accelerating Change.
Research and innovation are at the heart of Retina International’s mission to improve the lives of people affected by retinal conditions.
As one of Retina International’s three key pillars—Advocate, Educate, and Innovate—our research work focuses on advancing science while ensuring that innovation reflects the real-world needs, priorities, and experiences of the global retinal community.
We believe that meaningful progress happens when people living with retinal conditions are active partners in research. By bringing together patients, researchers, clinicians, industry partners, and policymakers, we help shape research that addresses not only the development of new treatments, but also the wider challenges faced throughout the patient journey.
Our research aims to
As a global umbrella organisation, Retina International supports and enhances the work of its member organisations worldwide. Through collaboration and shared knowledge, we help build a common vision across the patient-led retina community and work towards equitable access to healthcare, research opportunities, and emerging therapies for everyone affected by retinal conditions.
Patient-Centred Research
Retina International believes that research must reflect the realities of people living with retinal conditions.
Patient-centred research ensures that:
- Research priorities reflect community needs
- Outcomes measured in studies are meaningful to patients
- Treatments are developed with consideration of quality of life and daily impact
- People affected by retinal conditions contribute their expertise and lived experience
Through initiatives such as patient involvement programmes, surveys, workshops, and evidence-generation projects, Retina International works to ensure that the patient perspective is embedded throughout the research process.
Our Research: Overview
Retina International leads and contributes to a diverse range of research projects that advance understanding of retinal conditions and their impact on individuals, families, and society. Our work spans the economic and societal burden of disease, access to genetic testing and diagnosis, geographic atrophy, patient-reported outcomes, quality of life, caregiver impact, and patient preferences.
By generating evidence on lived experiences, healthcare needs, barriers to care, and treatment priorities, we help ensure that the voices of people living with retinal conditions inform research design, clinical trials, treatment development, and healthcare decision-making.
Explore The Full Catalogue of Our Research Publications.
Research
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Retina International Research Projects
Cost of Illness Studies
Understanding the economic, social, and personal impact of retinal conditions.
Research includes:
- Direct healthcare costs
- Impact on employment and productivity
- Caregiver burden
- Quality of life
- Societal impact
Genetic Testing Research
Genetic diagnosis is transforming the understanding and management of inherited retinal diseases.
Our research explores:
- Access to genetic testing
- Patient experiences
- Diagnostic pathways
- Barriers and inequalities
- The role of genetic information in treatment development
Geographic Atrophy Research
Retina International works to better understand the experiences, priorities, and treatment expectations of people living with geographic atrophy.
Research focuses on:
- Disease burden
- Patient priorities
- Meaningful treatment outcomes
- Emerging therapies
Putting the Patient Voice at the Centre of Innovation
Patient-Reported Outcomes
Understanding symptoms, challenges, treatment expectations, and outcomes that matter most to people living with retinal conditions.
Quality of Life Studies
Exploring how retinal conditions affect:
- Independence
- Wellbeing
- Education
- Employment
- Social participation
Caregiver Impact
Recognising the important role of caregivers and understanding the wider impact of retinal conditions on families.
Research explores:
- Caregiver responsibilities
- Emotional impact
- Time commitments
- Economic burden
Patient Preferences
Ensuring patient priorities inform:
- Research design
- Clinical trial outcomes
- Treatment development
- Healthcare decision-making
Clinical Trials Resources
This page brings together trusted resources on current and upcoming trials, registries, and resources to help you explore ongoing clinical trials, discover registries for inherited retinal diseases (IRDs) and learn more about retinal research.
Gene therapy
Gene therapy delivers functional copies of genes or modifies genetic changes to address the underlying genetic cause of disease.
Retinal cell therapies
Retinal cell therapies explore the replacement or regeneration of damaged retinal cells to help restore visual function.
Retinal prostheses and vision restoration technologies
Retinal prostheses and vision restoration technologies use innovative devices and technologies to stimulate remaining retinal pathways and support vision.
Natural history studies and registries
Natural history studies and registries collect long-term data to better understand how disease progresses and to guide future treatment development.
Our Commitment to Innovation
Innovation is not only about discovering new treatments. It is about ensuring that advances in research translate into meaningful improvements in people’s lives.
Retina International believes successful innovation requires:
- Patient participation in research
- Education and empowerment
- Evidence-based policy development
- Collaboration across the global retinal community
- Equitable access to healthcare and emerging therapies
Through our Innovate pillar, we strive to advance research that addresses the holistic needs of people affected by retinal conditions and helps build a future where everyone has the opportunity to access the care, treatments, and support they need.
Get Involved in Research
Discover publications, projects, and evidence shaping the future of retinal health. Learn how patients and communities can contribute to innovation.
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