Natural History Look at Advanced Rod-Cone Dystrophy under Standard Care

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

ECSTASI is a natural history study observing how standard of care influences outcomes in advanced rod-cone dystrophy. The study collects health information in three parts: retrospective medical records from the past up to 10 years, prospective in-person visits for up to one year, and prospective medical records up to one year. Participants can choose to participate in all parts or only selected parts. Interventions are limited to eye examinations and questionnaires, with no experimental drugs or treatments administered. Eligibility includes adults with a clinical diagnosis of advanced RCD and sufficient vision in at least one eye, among other criteria.

Why it matters

Who can join: the full rules

Inclusion Criteria:

1. Males and females 18 years of age or older, with history of formed vision
2. Clinical diagnosis of advanced retinal degeneration due to RCD
3. BCVA no better than (≥) 1.0 LogMAR (≤35 Early-Treatment Diabetic Retinopathy Study \[ETDRS\] letters, or 20/200 Snellen equivalent) in at least one eye
4. Documented preservation of foveal Outer Nuclear Layer (ONL) in at least one eye

Exclusion Criteria:

1. Individuals who are receiving or have received an investigational medicinal product (IMP) in another clinical trial are excluded from the prospective part . However, they can participate in the retrospective part of the study.
2. Individuals with a medical condition (systemic or ophthalmic), psychiatric condition (including substance abuse disorder), physical examination or laboratory findings that may in the opinion of the Investigator preclude adherence to the scheduled study visits, safe participation in the study, or affect study results are excluded from participating in in-person study visits. However, they can participate in the collection of data reported during both retrospective and prospective SoC routine eye examinations.

Where it's running

• Ghent University Hospital
  Ghent, Belgium Recruiting
• CHNO XV-XX Paris - CIC 1423
  Paris, France Not yet recruiting
• Royal Victoria Eye And Ear Hospital
  Dublin, Ireland Not yet recruiting

Study contacts

• Study coordinator: SparingVision
• Email: info@sparingvision.com
• Phone: +33143462060

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.