Natural History Study of Usher Syndrome ( Light4Deaf )

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.

NCT Number	NCT04665726
Lead Sponsor	Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts Collaborators: Assistance Publique - Hôpitaux de Paris
Conditions	Usher Syndromes
Enrollment	400 participants
Start Date	2017-06-08
Primary Completion	2022-06-08 (estimated)
Study Completion	2027-06-08 (estimated)
Updated on ClinicalTrials.gov	2020-12-14