Follows people with Usher syndrome over time to track vision, hearing and balance

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for people with Usher syndrome type I, II or III. They are followed for 5 years to record how the disease changes in the eyes, hearing and balance.

Sex

All sexes can join.

Disease stage

Usher syndrome type I, II or III.

Biomarker or test result

A molecular (genetic) diagnosis of Usher syndrome, or a clinical diagnosis that will then be confirmed by a molecular diagnosis.

Main reasons for not taking part

• People who cannot understand the study and cannot give informed consent, themselves or through a legal representative

The registry criteria, word for word

What the trial wants to find out

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.