Observational Study to Evaluate Testing Methods and Measurement Properties in Patients with Retinal Degeneration

What this Trial Is About

Researchers are conducting an observational study at the Vision Research and Assessment Institute (VRAI) to evaluate testing methods for patients with low vision caused by retinal diseases. The study focuses on patients with various retinal degenerations including Retinitis Pigmentosa, Choroideremia, Stargardt Macular Dystrophy, Geographic Atrophy from Age-related Macular Degeneration, X-linked Retinoschisis, and other retinal dystrophies. The goal is to assess how well these patients use their vision, how tests relate to daily activities, and to refine testing endpoints specific to low vision conditions. Participants will undergo an initial visit involving a series of visual efficacy tests in a comfortable and familiar environment facilitated by experienced low vision specialists. They will have a follow-up visit within two weeks and then periodic visits for up to one year. No treatments or interventions are given since this is a non-interventional observational study that monitors vision and disease progression over time. Throughout the study, participants will complete visual assessments designed to measure their vision capabilities and how these relate to their daily living activities. Researchers will evaluate the precision, accuracy, and feasibility of each test for patients with moderate to profound vision impairment. The main outcome measured at three months is the operational feasibility of the tests, with secondary outcomes examining measurement properties over two years. The total participation duration varies up to one year with ongoing assessments and monitoring.

Observational Study to Assess Endpoint Operational Feasibility & Measurement Properties in Patients with Retinal Degeneration