Assessment of Visual Field and Navigation Tests in Adults with Moderate to Severe Inherited Retinal Diseases

What this Trial Is About

Researchers are evaluating the operational feasibility and measurement properties of various visual function assessments for patients with moderate to profound inherited retinal diseases, including Retinitis Pigmentosa and other retinal dystrophies. The study focuses on tests sensitive to peripheral vision and functional abilities such as spatial orientation, mobility, and wayfinding. This observational, non-interventional research aims to improve and standardize efficacy endpoints for people with low vision. Participants include up to 50 patients divided into two groups those with Retinitis Pigmentosa and those with other retinal dystrophies. The study does not involve treatment but assesses visual function through a battery of tests over time. The primary outcome is the feasibility of testing patients with moderate to profound vision impairment within three months, with secondary outcomes measuring patient- and assessor-based properties of each test modality over two years. During the study, participants will undergo various visual assessments designed to reflect real-life visual challenges. Researchers will collect data on the reliability and sensitivity of these tests. The study spans up to two years, emphasizing long-term evaluation of measurement tools. Participants safety and compliance will be monitored, and the study supports the development of better testing methods for low vision conditions.

Development and Evaluation of Functional Visual Field and Navigation Endpoints in Moderate to Profound Inherited Retinal Disease (DEFINE-IRD)