Natural History Study of Usher Syndrome ( Light4Deaf )
Recruiting now
Conditions studied: Usher Syndromes
In brief
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.
Key facts
- Study ID
- NCT04665726
- Run by
- Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts
- People needed
- 400
- Starts
- 2017-06-08
- Expected to finish
- 2027-06-08
- Last updated by the study team
- 2020-12-14
Who can join
Age: any. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- Patient or his/her legal representatives unable to understand the study and for whom informed consent cannot be obtained
Where it is running
- Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts — Paris, France (enrolling)
- CHU Pitié Salpêtrière — Paris, France (enrolling)
- CHU Necker — Paris, France (enrolling)
- CHU Robert Debré — Paris, France (enrolling)
Full record on ClinicalTrials.gov
Trial information comes from ClinicalTrials.gov and is refreshed daily. TrialsForMe does not provide medical care and does not run the studies it lists.