UnknownNot Applicable

Structural and Functional Characterization of Rare Ocular Diseases

Spain50 participantsStarted 2021-11-24

Plain-language summary

Rare ocular diseases (ROD) are a heterogeneous group of ocular diseases that affect very few people and, generally, for which no tretament is available. An important subgroup of these diseases are inherited retinal degenerations. In this study we focus on understanding the natural history of different ROD that affect the posterior segment.

Who can participate

Age range

18 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Male or female 18 years or older with a diagnosis of a ROD affecting the posterior segment * Patients able to undergo all required ophthalmic exams * Patients able and willing to sign an informed consent Exclusion Criteria: * Patients with other concomitant posterior segment disorders * Patients taking drugs known to affect the retina and/or optic nerve * Patients that underwent an intraocular surgery (aside from phacoemulsification with intraocular lens implantation), corneal or glaucoma surgery * Patients who have participated in the past 12 months or that are currently participating in clinical trials for an ocular disease

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Change in best corrected visual acuity

Timeframe: Year 2 as compared to baseline

Trial details

NCT IDNCT05258032

SponsorBarcelona Macula Foundation

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2024-11-24

Contact for this trial

Marc Biarnes, PhD

+34935950155 mbiarnes@barcelonamaculafound.org

View on ClinicalTrials.gov More Retinitis Pigmentosa trials