We are delighted to organise an upcoming Association for Research in Vision and Ophthalmology (ARVO) Special Interest Group (SIG) session focused on patient-reported outcome measures (PROMs) and their potential role as clinical trial endpoints in inherited retinal degenerations (IRDs).
The session, titled “Patient Reported Outcome Measures (PROMs) in Inherited Retinal Degenerations: Potential for Clinical Trial Endpoints,” will take place virtually on June 25th and is organised by Retina International’s Director of Research, Patient Evidence and Programmes, Dr Nabin Paudel.
Inherited retinal degenerations are a diverse group of retinal conditions that cause progressive vision loss over time. While traditional clinical trial endpoints such as visual acuity remain important, they do not always capture changes that patients themselves perceive as meaningful in daily life. As retinal therapies continue to advance, there is increasing recognition that patient experience data and patient-reported outcomes must play a stronger role in evaluating treatment impact.
The session will explore why patient experience data matters, the current landscape and limitations of PROMs in IRDs, and how these tools may contribute to future regulatory and clinical trial decision-making.
The programme will bring together patient, clinical, research, and regulatory perspectives, including presentations from our CEO Avril Daly and Konrad Pesudovs from the University of New South Wales.
Topics discussed during the SIG will include:
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Why patient experience data is essential in healthcare decision-making
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What aspects of vision and daily functioning matter most to people living with IRDs
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Current PROMs available in IRDs and their limitations
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The need for more flexible and adaptive patient-centred measurement tools
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The future role of PROMs in regulatory assessment and clinical trial design
Session Details
Patient Reported Outcome Measures (PROMs) in Inherited Retinal Degenerations: Potential for Clinical Trial Endpoints
Date: June 25, 2026
Time: 8:00 – 9:30 AM ET
Location: Virtual
