Novel Technologies to Measure Vision-related Quality of Life
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Tablet- and virtual reality headset-based test of vision-related quality of life.
- Who it may be relevant to
- Registry conditions: Neurodegenerative Diseases, Inherited Optic Neuropathy. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Center list to be confirmed — check the primary protocol.
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Feasibility Study of Novel Technologies to Measure Vision-related Quality of Life in Patients With Neurodegenerative Diseases Affecting the Optic Nerve or Retina
Overview
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
- Other Tablet- and virtual reality headset-based test of vision-related quality of life
* Tablet-based testing of functional vision * Virtual reality headset-based testing of functional vision * Questionnaire on experience of tests * Questionnaire on experience of vision
Primary outcome measures
- Agreement of test performance with PROM [Time frame: 1 day]
- Agreement of traditional measures of vision with PROM [Time frame: 1 day]
Secondary outcome measures (1)
- Experience of performing tests [Time frame: 1 day]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-only
Study locations
Center list to be confirmed — check the primary protocol.
Identifiers
NCT: NCT07489898 · A097651