Research opportunity for people with confirmed Stargardt disease
Please find below a research opportunity for people with confirmed stargardt disease.
The research team at the Western Eye Hospital (Marylebone Rd, London, NW1) have asked us to share an opportunity to participate in a study focused on ABCA4-related Stargardt’s disease. They are investigating whether DARC imaging can help to detect the earliest retinal changes in adolescents and adults with Stargardt disease.
You will find more information below from the researchers below about the study and what it involves. Contact details for the researchers can also be found in this information, so do get in touch with them directly if you have any questions. This study is open to those with ABCA4-related Stargardt disease only. There is no fixed deadline to register interest.
What is DARC imaging?
DARC is a new type of eye scan that can detect stressed or dying retinal cells due to disease. It can show signs of disease before permanent changes are visible on standard scans, and well before blindness. It involves a small injection into a vein in the arm, followed by retinal imaging. It does not treat Stargardt disease but helps researchers better identify early disease and understand how the disease is progressing, and in the future, it will help doctors treat patients before they lose their vision.
What is involved in the study?
This is an observational study, meaning there is no experimental treatment involved. However, DARC itself is regarded as an exploratory biomarker. Participants would attend four visits over 12 months at Western Eye Hospital in London. Visits will include DARC imaging (first three visits) and standard retinal scans (all four visits). Each visit may last 3-4 hours. Travel reimbursement is typically available and would be confirmed before enrolment into the study.
Who can take part?
Participants must have a confirmed diagnosis of Stargardt disease caused by mutations in the ABCA4 gene. Many people may not know the detailed genetic terminology, and that is completely fine – the study team will review genetic results to confirm eligibility.
What are the potential benefits?
There is no direct medical benefit to participants, as this study does not provide treatment. However, participants will receive detailed monitoring results during the study. Moreover, contributing to this research will help improve how Stargardt disease progression is measured, potentially accelerating the development of future therapies for the wider community.
Contact details:
Email [email protected] ; please write “FAO Diogo Carvalho” in the email subject line.