Inherited Optic Neuropathy, Neurodegenerative Diseases
Conditions
Brief summary
Traditional ways of measuring vision, such as reading letters on an eye chart, do not fully reflect the real-life visual problems experienced by people with eye diseases. Many patients report difficulties with things like contrast, recognising faces, and identifying items whilst shopping - challenges that are not captured by standard clinical tests. As a result, it is hard to understand the true impact of these conditions on everyday life, or to measure how well new treatments are working. Some new treatments for eye diseases have shown promise, but clinical trials have often struggled to show clear benefits. This is largely because the tools used to measure vision changes in trials are not sensitive enough to detect the kinds of improvements that matter most to patients. This pilot study will explore whether novel, technology-based tests, delivered via tablets and virtual reality headsets, can better measure meaningful changes in vision and quality of life. These tools are designed to be more engaging and reflective of real-world visual tasks, such as navigating environments or detecting objects in low light. Fifty participants with neurodegenerative diseases affecting the optic nerve or retina will take part in the study. Researchers will assess how feasible and acceptable these new tools are to patients and whether the results they produce align more closely with patients' lived experiences. Ultimately, this research aims to improve how we assess vision in clinical trials, so that future treatments can be properly tested and approved based on measures that truly reflect patients' needs. If successful, it could lead to better-designed trials, more effective treatments, and improved quality of life for people living with visual impairment.
Interventions
* Tablet-based testing of functional vision * Virtual reality headset-based testing of functional vision * Questionnaire on experience of tests * Questionnaire on experience of vision
Sponsors
Study design
Eligibility
Inclusion criteria
* Adults with neurodegenerative diseases affecting the optic nerve or retina who have sufficient manual dexterity to perform tablet-based and virtual reality headset-based tests. Informed consent will be received.
Exclusion criteria
* Those under the age of 18 years old * Those who do not have sufficient manual dexterity to perform the tablet-based and virtual reality headset-based tests
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Agreement of test performance with PROM | 1 day | Agreement between the tablet-based and virtual reality headset-based tests of real-world vision, with the patient's experience of their vision-related quality of life as assessed using a validated patient-reported outcome measure tool |
| Agreement of traditional measures of vision with PROM | 1 day | • Secondary comparison will be made between the patient's performance on traditional measures of vision and their response on the vision-related quality of life questionnaire. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Experience of performing tests | 1 day | • The secondary endpoint will be the subjective experience of the tablet-based and virtual reality headset-based tests, as measured by questionnaire surveys. |