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New study aims to map vision decline in rare genetic disorder

NCT ID NCT07278843

Knowledge-focused Sponsor: Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 60 people with Usher syndrome type 1B, a rare genetic condition causing deafness and progressive vision loss. Researchers will measure how vision changes over time using standard eye tests and new virtual reality tools. No treatment is given; the goal is to better understand the disease and validate tests for future trials.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 60 people

The number the study aims to enrol. It can still change while the study runs.

Started

Oct 2025

Expected to finish

Sep 2032

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with Usher syndrome (USB1B)

Ages

3 to 75 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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 security system (according to article L1121-8-1 of the French Public Health Code); For participants in the MOST-VR mobility test and VR-ViSA visual search test (Streetlab), additional criteria apply: * Sufficient knowledge of spoken and signed French to ensure understanding of tasks and instructions; * Have a cochlear implant allowing comprehension of auditory instructions for the virtual reality mobility test and a MMSE score ≥ 20/25; * Age between 18 and 75 years. Exclusion Criteria: * Unable to participate in all study visits; * Expected to enter an experimental treatment trial at any time during this study; * Presence of ocular conditions that may affect eye status other than retinitis pigmentosa (e.g., history of retinal detachment, glaucoma, vein occlusion, diabetic retinopathy, etc.); * Participation in the previous gene replacement trial (USHSTAT, NCT01505062); * Pregnant, delivering, or breastfeeding women (according to article L1121-5 of the French Public Health Code); * Persons deprived of liberty by judicial or administrative decision (article L1121-6 of the French Public Health Code); * Adults under legal protection measures or unable to provide consent (article L1121-8 of the French Public Health Code). For participants in the MOST-VR mobility and VR-ViSA visual search tests, the following non-inclusion criteria apply: * MMSE score without visual items ≤ 20/25; * Physical or cognitive impairment that could interfere with mobility; * Medication that may cause motor, visual, or cognitive disorders (e.g., APS, neuroleptics) or interfere with study assessments.

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Conditions

The condition(s) this trial relates to.

hereditary disease Usher syndrome Usher syndrome type 1B

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Usher syndrome

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Centre National d'Ophtalmologie des Quinze-Vingts

    RECRUITING

    Paris, Île-de-France Region, 75012, France

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