Understanding Usher Syndrome and Vision Testing
Natural History of Photoreceptor Degeneration in USH1B: Clinical Parameters and Validation of Functional Vision Tests in MYO7A
Recruiting
Observational Study
Usher Syndrome
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 3 – 75
- Sex
- Any
- Study type
- Observational
- Participants needed
- 60 (estimated)
- Sponsor
- Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts · Other
Who this trial is looking for
This trial is looking for people with Usher Syndrome type 1 who are at least 3 years old. Participants will help researchers learn more about vision loss and test new ways to measure vision using virtual reality.
Are You a Good Fit for This Trial?
You may be able to join if
- I am at least 3 years old.
- I have been diagnosed with Usher Syndrome type 1 in both eyes.
- I have a social security system affiliation.
- I can understand spoken and signed French.
- I have a cochlear implant.
- I am between 18 and 75 years old.
You may not be able to join if
- I cannot participate in all study visits.
- I am expected to enter another treatment trial during this study.
- I have serious eye problems other than retinitis pigmentosa.
- I have participated in a previous gene replacement trial.
- I am pregnant, delivering, or breastfeeding.
- I am under judicial or administrative custody.
- I am under legal protection measures or cannot give consent.
Summarized in plain language from this trial's official eligibility criteria. The full criteria are further down this page — only the research team can confirm whether you qualify.
Think this trial could be right for you?
Answer a few quick questions to see if you may meet the eligibility requirements.
Check Your Eligibility
About This Trial
Inherited retinal diseases (IRDs) are a group of degenerative disorders that cause progressive vision loss. Retinitis pigmentosa (RP) is the most common form, with a global prevalence of approximately 1 in 4,500. About 20-30% of these cases are syndromic, most notably Usher syndrome (USH), which combines hearing loss with visual impairment. Usher syndrome type 1 (USH1), the most severe form, prese…
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Be at least 3 years old;
* Have a clinical diagnosis of USH1 in both eyes, meaning subjects with congenital profound deafness, vestibular dysfunction, and rod dystrophy, carrying biallelic class 4 or 5 variants in the MYO7A gene;
* Be affiliated with or beneficiary of a social…
Contacts