NCT04665726 Natural History Study of Usher Syndrome ( Light4Deaf )
| NCT ID | NCT04665726 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts |
| Condition | Usher Syndromes |
| Study Type | OBSERVATIONAL |
| Enrollment | 400 participants |
| Start Date | 2017-06-08 |
| Primary Completion | 2022-06-08 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 400 participants in total. It began in 2017-06-08 with a primary completion date of 2022-06-08.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
Clinical centres in the LIGHT4DEAF consortium have developed and will continue to improve a reliable, early molecular diagnosis and protocols for full clinical characterisation of Usher syndrome, which will be valuable for the foreseen USH clinical trials. The clinical arm of the project aims at performing a deep-phenotyping of retinal degeneration, hearing loss, vestibular dysfunction, neurocognitive ability of subects with a molecular diagnosis of any Usher syndrome. Functional and structural parameters for retinal, auditory, and vestibular impairments are followed overtime to document the natural history of the disease and establish relevant clinical endpoint for disease progression that may be useful for future clinical trials.
Eligibility Criteria
Inclusion Criteria: * Patient with a molecular diagnosis of Usher syndrome type I, II or III or a clinical diagnosis of Usher syndrome type I, II or III which will then be confirmed by a molecular diagnosis * Health insurance beneficiary * Informed consent signed by the patient or their legal representatives Exclusion Criteria: • Patient or his/her legal representatives unable to understand the study and for whom informed consent cannot be obtained
Contact & Investigator
Isabelle AUDO, Pr
PRINCIPAL INVESTIGATOR
Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts
Frequently Asked Questions
Who can join the NCT04665726 clinical trial?
This trial is open to participants of all sexes, studying Usher Syndromes. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT04665726 currently recruiting?
Yes, NCT04665726 is actively recruiting participants. Contact the research team at isabelle.audo@inserm.fr for enrollment information.
Where is the NCT04665726 trial being conducted?
This trial is being conducted at Paris, France, Paris, France, Paris, France, Paris, France.
Who is sponsoring the NCT04665726 clinical trial?
NCT04665726 is sponsored by Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts. The principal investigator is Isabelle AUDO, Pr at Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts. The trial plans to enroll 400 participants.