Observational Study to Evaluate Vision Tests for Patients with Retinal Degeneration Non-Interventional Research on Testing Feasibility and Measurement Accuracy

What this Trial Is About

Researchers are evaluating methods to test patients with low or very low vision caused by retinal diseases, including Retinitis Pigmentosa, Choroideremia, Stargardt Macular Dystrophy, Geographic Atrophy from Age-related Macular Degeneration, X-linked Retinoschisis, and other retinal dystrophies. This observational, non-interventional study aims to assess the operational feasibility and measurement properties of various vision assessment endpoints in these patients. The Vision Research and Assessment Institute (VRAI) provides a specialized environment with experienced low vision specialists to conduct standardized efficacy testing for this population. Participants will attend an initial visit to undergo a series of vision tests designed to evaluate how well they use their vision and how these tests relate to daily living activities. Following the first visit, patients may be invited for a follow-up visit within two weeks and additional visits periodically for up to one year. The study seeks to understand the clinical meaningfulness of these tests, the impact of disease progression, and the accuracy and precision of the assessments. Throughout the study, patients will undergo repeated vision tests and assessments to monitor changes and gather data on their visual abilities. Researchers will evaluate the operational feasibility of testing moderate to profound vision-impaired patients over a three-month period and monitor outcomes related to their eye conditions. The total duration of participation may extend to one year with scheduled visits to track disease progression and test reliability.

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