Actively Recruiting

All Genders
NCT04665726

Natural History Study of Usher Syndrome ( Light4Deaf )

Led by Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts · Updated on 2020-12-14

400

Participants Needed

4

Research Sites

521 weeks

Total Duration

On this page

Sponsors

C

Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

Lead Sponsor

A

Assistance Publique - Hôpitaux de Paris

Collaborating Sponsor

AI-Summary

What this Trial Is About

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.

CONDITIONS

Official Title

Natural History Study of Usher Syndrome ( Light4Deaf )

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • 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
Not Eligible

You will not qualify if you...

  • Patient or his/her legal representatives unable to understand the study and for whom informed consent cannot be obtained

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Trial Site Locations

Total: 4 locations

1

Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

Paris, France, 75012

Actively Recruiting

2

CHU Pitié Salpêtrière

Paris, France, 75013

Actively Recruiting

3

CHU Necker

Paris, France, 75015

Actively Recruiting

4

CHU Robert Debré

Paris, France, 75019

Actively Recruiting

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Research Team

I

Isabelle AUDO, Pr

CONTACT

T

Thilissa DIB

CONTACT

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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