Follows people with advanced rod-cone dystrophy, a retinal disease, over time
Records how standard care affects advanced rod-cone dystrophy in adults over time.
Plain-language title generated from the registry record
Registry title: Natural History Study of Advanced RCD
Key facts
- Where
- Ghent, BelgiumSee the site
Where in Belgium
- Ghent university hospitalGhent, BelgiumTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- SparingVision
- Trial code
- NCT07854899
- Record updated
- 8 October 2026
- Original description
ECSTASI is a Natural History Study, which will be monitoring how standard of care (SoC) affect advanced rod-cone dystrophy (RCD), a type of eye disease also known as retinitis pigmentosa. No experimental, investigational or any other drug or treatment will be tested during the study.Read full original descriptionShow less
External Control, preScreening, and naTurAl hiStory of Advanced retInal Degeneration Due to Rod-cone Dystrophy (ECSTASI)
ECSTASI is a Natural History Study, which will be monitoring how standard of care (SoC) affect advanced rod-cone dystrophy (RCD), a type of eye disease also known as retinitis pigmentosa. No experimental, investigational or any other drug or treatment will be tested during the study.
This study collects information in 3 parts:
Part 1: retrospective health information from medical records (up to past 10 years), Part 2: prospective health information from in-person visits (up to 1 year), and Part 3: prospective health information from medical records (up to 1 year). Participants will decide if they wish to participate in all or only to some of these parts.
Inclusion: Males and females 18 years of age or older, with history of formed vision; Clinical diagnosis of advanced retinal degeneration due to RCD; 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; Documented preservation of foveal Outer Nuclear Layer (ONL) in at least one eye.
Exclusion: 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; 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.