Clinical and Genetic Examination of Usher Syndrome Patients' Cohort in Europe (NCT01954953) | Clinical Trial Compass
UnknownNot Applicable
Clinical and Genetic Examination of Usher Syndrome Patients' Cohort in Europe
France, Germany, Netherlands100 participantsStarted 2013-09
Plain-language summary
This study aims to characterize Usher patients in order to correlate this data with genetic information.
Tasks:
* Standardization and improvement of Usher syndrome diagnosis: refine and elaborate special tests of visual and otological function in association with genotype that enable to determine the most significant markers for Usher disease progression and therapeutic effect.
* Perform genotype and phenotype correlations in Usher syndrome patients
* Develop and maintain database for phenotypically and genotypically well-characterized patient cohorts, suitable for future therapeutic trials
Who can participate
Age range
6 Months – 70 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria :
* Clinical characteristics for USH1, USH2 and USH3 as defined by the Usher syndrome consortium;
* Informed consent and agreement to participate in the study;
* Distance best corrected visual acuity ≥ 0.1.
Exclusion criteria:
* Systemic pathologies or severe ocular pathologies, systemic or topical medication usage, and/or other otolaryngology pathologies which could contaminate the results;
* Unwillingness to provide a blood sample ;
* Unwilling and/or unable to undergo the study procedures.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Genotype and phenotype correlations in Usher syndrome patients
Timeframe: up to 3 years (2016)
Trial details
NCT IDNCT01954953
SponsorCentre Hospitalier National d'Ophtalmologie des Quinze-Vingts