Actively Recruiting
Natural History Study of Patients With EYS-Associated RP
Led by Sensor Technology for Deafblind · Updated on 2026-04-28
45
Participants Needed
1
Research Sites
229 weeks
Total Duration
On this page
Sponsors
S
Sensor Technology for Deafblind
Lead Sponsor
R
Russian RetinaFond
Collaborating Sponsor
AI-Summary
What this Trial Is About
This natural history study of patients with EYS mutations from Russia and former CIS (Commonwealth of Independent States) territories will accelerate the development of outcome measures for clinical trials. Sensitive, reliable outcome measures of retinal degeneration will greatly facilitate development of treatments for retinitis pigmentosa due to EYS mutations. This approach helps to develop experimental treatment protocol, and assessing its effectiveness. The goals and expected impact of this natural history study are to: 1. Describe the natural history of retinal degeneration in patients with biallelic mutations in EYS gene in Russia and former CIS territories. 2. Identify sensitive structural and functional outcome measures to use for future multicenter clinical trials in EYS-related retinal degeneration in Russia and former CIS territories. 3. Identify well-defined subpopulations for future clinical trials of investigative treatments for EYS-related retinal degeneration in Russia and former CIS territories.
CONDITIONS
Official Title
Natural History Study of Patients With EYS-Associated RP
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Willing to participate and able to communicate consent
- Able to return for all study visits over 48 months
- Age 18 years or older
- Must have at least one disease-causing variant in the EYS gene confirmed by certified or approved lab
- Both eyes must have a clinical diagnosis of retinal dystrophy
- Both eyes must have clear ocular media and allow adequate pupil dilation for imaging
You will not qualify if you...
- Mutations in genes causing autosomal dominant or X-linked retinitis pigmentosa, or biallelic mutations in other autosomal recessive retinal dystrophy genes besides EYS
- Expected to enter experimental treatment trial during this study
- History of more than 1 year cumulative treatment with agents linked to pigmentary retinopathy (e.g., hydroxychloroquine, chloroquine)
- Either eye has current vitreous hemorrhage or history of rhegmatogenous retinal detachment
- Either eye has spherical equivalent refractive error worse than -8 Diopters of myopia
- Intraocular surgery in last 3 months
- Diagnosis or history of glaucoma
- History of retinal vascular occlusion or proliferative diabetic retinopathy
- Ocular disease that may affect visual function assessment
- History or current active treatment for retinitis pigmentosa affecting disease progression, including ocular stem cell or gene therapy
- Treatment with ophthalmic oligonucleotides within last 9 months
- Treatment with other products within five times their expected half-life before screening visit
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Oftalmic Clinical Research Center
Moscow, Russia, 125167
Actively Recruiting
Research Team
O
Olga Luneva
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
3
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