Natural History Study of Usher Syndrome ( Light4Deaf )

Launched by CENTRE HOSPITALIER NATIONAL D'OPHTALMOLOGIE DES QUINZE-VINGTS · Dec 7, 2020

Keywords

ClinConnect Summary

The LIGHT4DEAF trial is studying Usher syndrome, a condition that affects both hearing and vision. Researchers are working to improve how we diagnose Usher syndrome early and to understand how it progresses over time. This study aims to gather detailed information about the hearing, vision, balance, and cognitive abilities of individuals diagnosed with Usher syndrome. By tracking these changes, the trial hopes to establish important markers that can help in future clinical trials aimed at finding new treatments.

To be eligible for the study, participants need to have a confirmed diagnosis of Usher syndrome type I, II, or III, either through genetic testing or clinical evaluation. They should also be covered by health insurance and able to provide informed consent, meaning they understand the study and agree to participate. Those who join the study can expect to undergo various assessments related to their hearing and vision, and their overall health will be monitored over time. This trial is a valuable step toward better understanding Usher syndrome and potentially improving treatments for those affected.

Gender

ALL

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