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Publications, Conference Abstracts and Presentations

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ARVO Annual Meeting Abstracts

EURetina Abstracts

ISPOR Abstracts

Publications (Retina International Projects)

Publications (Affiliate Projects)

ARVO Annual Meeting Abstracts

2026

Association Between Vision and Mental Health: Findings from Wave 3 of The Irish Longitudinal Study on Ageing (TILDA)


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Association between visual acuity and cognitive performance: Evidence from The Irish Longitudinal Study on Ageing (TILDA)


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2025

Burden of geographic atrophy and treatment expectations of therapies: perspectives from patient-driven research funding and support organizations


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Accuracy and Readability of ChatGPT-4o Generated Responses to Queries on Age-related Macular Degeneration for Patient Education and Counselling


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2024

Enhancing Clinician-Patient Communication in Age-related Macular Degeneration


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Enhancing Clinician-Patient Communication in Age-related Macular Degeneration


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Patient and caregiver burden in advanced Age-related Macular Degeneration (AMD)


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Patient and caregiver burden in advanced Age-related Macular Degeneration (AMD)


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2023

Socioeconomic Burden of Advanced Age-related Macular Degeneration (AMD) in the United States of America (USA), Germany and Bulgaria


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Socioeconomic Burden of Advanced Age-related Macular Degeneration (AMD) in the United States of America (USA), Germany and Bulgaria


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2021

The Genetic Testing Landscape in Europe 2020


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Cost of Illness Study of Inherited Retinal Diseases in the USA and Canada


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EURetina Abstracts

2022 - EURETINA 22 Hamburg

Genetic testing experiences of people living with inherited retinal diseases (IRDs) – results of a global survey


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Impact of Age-related Macular Degeneration (AMD) in the United States of America (USA), Germany and Bulgaria from a Cost-of-illness, Wellbeing and Patient Activation Perspective


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ISPOR Abstracts

2024

Short-Term Evaluation of a Capacity Building Training Course (Retina International Education Hub) for Patients and Patient Representatives in Patient Involvement in Degenerative Retinal Diseases Research and Development


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Publications (Retina International Projects)

2025

Prioritising the Burden of Geographic Atrophy and Treatment Expectations: A Modified Nominal Group Technique Study with International Patient-Led Organisations


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Valuing patients’ high unmet need to drive innovative therapies for inherited retinal degenerations: insights from the RIWC 2024 workshop on value


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2024

Retina International JAMA Ophthalmology Publication October 2024


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Genetic Testing


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2022  

AMD Impact: Cost of Illness Study


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2020 

IRDCOUNTS: Cost-of-Illness Studies


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Publications (Affiliate Projects)

2026

A cost of illness model to estimate the annual societal costs of X-linked retinitis pigmentosa (XLRP) in the United Kingdom (UK)


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Post-Visual Diagnosis Distress: The Weight of Threatened Sight


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The socioeconomic impact of inherited retinal dystrophies (IRDs) in Belgium: A cost-of-illness study


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2025

Awareness of Myopia Associated Complications and Perspectives on Myopia Management Among Parents of Children with Myopia in France and the UK


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The Impacts of Caregiving for Patients with X-Linked Retinitis Pigmentosa (XLRP):


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The Burden of X-linked retinitis pigmentosa (XLRP) on patient experience


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2024

Therapies for Inherited Retinal Dystrophies: What is Enough? 


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Expert Consensus on Geographic Atrophy in the EU: A Call for Urgent Policy Action 


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Lived experiences of genetic diagnosis for rare disease patients: a qualitative interview study. 


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Real-World Safety and Effectiveness of Voretigene Neparvovec: Results up to 2 Years from the Prospective, Registry-Based PERCEIVE Study.


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Fundamentals of the Diagnosis and Management of Inherited Retinal Diseases


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2023

Save our Sight (SOS): a collective call-to-action for enhanced retinal care across health systems in high income countries 


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2022

Patient Preferences in the Management of Wet Age-Related Macular Degeneration: A Conjoint Analysis. 


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2021

Artificial intelligence extension of the OSCAR-IB criteria. 


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