Multicenter, Non-interventional Study, Describing Patients With Inherited Retinal Disease (IRD) in France
- Conditions
- Inherited Retinal Disease
- Registration Number
- NCT05122442
- Lead Sponsor
- University Hospital, Strasbourg, France
- Brief Summary
Genetic diagnostic testing becomes increasingly important for enhancing our understanding of the disease notably the genetics and providing the best care to the patients, and several initiatives seek to gather more data in order to better understand and treat those diseases.
Within this context, Novartis and SENSGENE/Strasbourg University Hospitals (HUS) want to set up, through a research collaboration, a non-interventional study in France to better understand the epidemiology of IRDs, particularly the distribution of pathogenic variants in patients. This study aims to serve as a starter study to implement an IRD national registry led by SENSGENE/Strasbourg University Hospitals (HUS). The data collected might also be used to populate global European registries. The primary objective has been defined in a sufficient broad way to address this perspective of registries.
As IRDs can present from birth to late middle age, this study will include both children and adult patients regardless of age, sex, and the type of IRD.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 1000
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Proportion of patients with IRD by clinical presentation 12 month Describe the type of IRD of patients clinically diagnosed and who attended a consultation at one of participating centers from SENSGENE network over the inclusion period.
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (1)
Les Hôpitaux Universitaires
🇫🇷Strasbourg, France