Recruiting

Tracking how eye disease progresses in people with advanced rod-cone dystrophy

Plain-English translation of NCT07854899 on ClinicalTrials.gov ↗ · Source last updated October 2026 · Translation generated October 2026 · How we translate trials

This study doesn't follow the usual testing phases — it may be an observational study or a different type of research.

What is this trial?

ECSTASI is a natural history study designed to understand how advanced rod-cone dystrophy (a progressive eye disease that causes vision loss) develops and changes over time in people with significant vision impairment. Rather than testing a new medication, this study simply collects information about your eye health from your medical records and routine visits to learn more about how the disease affects people in real life.

Researchers need to better understand how advanced rod-cone dystrophy progresses in patients so they can design better treatments and clinical trials in the future. By collecting real-world information about how the disease unfolds, scientists can identify patterns that will help develop more effective therapies.

Do you qualify?

You likely qualify if…

you are 18 years of age or older
you have been diagnosed with advanced rod-cone dystrophy (also called retinitis pigmentosa)
you have significant vision loss, with best corrected vision of 20/200 or worse in at least one eye
your eye imaging shows some remaining nerve tissue in the center of your retina (fovea) in at least one eye
you have had vision at some point in your life (not born blind)

You likely don't qualify if…

you are currently taking or have recently taken an experimental drug in another clinical trial (though you may still participate in the record-review parts)
you have a serious medical or psychiatric condition that would make it difficult to attend study visits
you have substance abuse issues that might affect your ability to participate safely
you have other eye or health conditions that, in the doctor's judgment, would interfere with the study or your safety

What participation looks like

You can participate in one, two, or all three parts of this study, depending on what you're comfortable with. Part 1 involves researchers reviewing your medical records from the past 10 years; Part 2 includes in-person visits over up to one year where doctors will perform routine eye exams and collect information; Part 3 involves ongoing collection of information from your regular eye care visits over the next year. No experimental treatments are given—the study simply gathers information to track how your condition changes.

AI-generated summary from trial data · Oct 12, 2026 · Not medical advice

Trial locations(3 sites)

Belgium

Ghent University Hospital, Ghent

France

CHNO XV-XX Paris - CIC 1423, Paris

Ireland

Royal Victoria Eye And Ear Hospital, Dublin