NCT04665726Recruiting
Natural History Study of Usher Syndrome ( Light4Deaf )
Natural History Study of Usher Syndrome in a Cohort of Patients Followed Longitudinally for 5 Years
Source: ClinicalTrials.gov · Last updated 14 Dec 2020 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 400 (estimated)
- First submitted
- 7 Dec 2020
- Start date
- 8 Jun 2017
- Primary completion date
- 8 Jun 2022
- Lead sponsor
- Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts
- NCT number
- NCT04665726
What you commit to
- Study type: Observational
- Planned participants: 400
- From 8 Jun 2017 to the primary completion date, 8 Jun 2022
- 4 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- Patient or his/her legal representatives unable to understand the study and for whom informed consent cannot be obtained
Who the study is looking for
- 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
Sex: All · Does not accept healthy volunteers
Sites (4)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| CHU Robert Debré Coordinator of this site? Confirm its status | Paris | France | Recruiting |
| CHU Pitie Salpetriere Coordinator of this site? Confirm its status | Paris | France | Recruiting |
| Centre Hospitalier National D'ophtalmologie Des Quinze Vingts Coordinator of this site? Confirm its status | Paris | France | Recruiting |
| CHU Necker Coordinator of this site? Confirm its status | Paris | France | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.