RecruitingOBSERVATIONAL

FECD-TRACE: Fuchs' Endothelial Corneal Dystrophy TRAjectory and Correlation With Genotype in the United Kingdom

FECD-TRACE is a study looking into Fuchs' Dystrophy, an inherited eye condition that can cause blurry vision. Researchers are trying to understand how this condition progresses and why some people get it while others don't, even with a similar genetic background. They plan to follow younger people who have a family history or early signs of Fuchs' Dystrophy over several years. During this time, they'll use advanced eye imaging techniques to spot subtle changes in the eye. They will also look at genetic information to see how a person's genes might be connected to how their eyes change. The main goal is to learn more about the condition's genetic causes and how these affect what doctors see. This knowledge could help develop more personalised treatments in the future.

At a glance

Status

Recruiting

Sponsor

University College, London

Enrolment target

500

Start

01 Feb 2024

Estimated completion

01 Feb 2027

Fuchs Dystrophy Fuchs' Endothelial Dystrophy Fuchs' Endothelial Corneal Dystrophy of Bilateral Eyes Corneal Dystrophy Fuchs Corneal Dystrophy

What is this study about?

Fuchs' Dystrophy is a common eye condition that gradually affects the clear front window of your eye, called the cornea. It can lead to blurred vision over time. This research, called FECD-TRACE, is part of a larger effort in the UK to understand Fuchs' Dystrophy better. The study focuses on people who might be at risk of developing the condition or are in its very early stages, even if they don't have symptoms yet.

The main aim of this study is to track how Fuchs' Dystrophy progresses over several years. Researchers will use special cameras and scanning equipment to take detailed pictures of your eyes. These pictures can show very subtle changes in the cornea that wouldn't be obvious otherwise. They will also look at your genetic information (from a blood or saliva sample) to see if there are links between specific genes and how the eye changes.

Learning more about these connections between our genes and the early signs of Fuchs' Dystrophy is really important. Because the condition develops slowly, it's hard to spot early. By understanding how it starts and changes, researchers hope to find ways to predict who might be affected and when. Ultimately, this information could help doctors offer more personalised care and potentially develop new treatments for people with Fuchs' Dystrophy in the future.

Key takeaways

It's a UK study about Fuchs' Dystrophy, a common eye condition.
Researchers want to track the condition's progress and genetic links.
Participation involves eye exams and providing a blood/saliva sample over several years.
The study doesn't offer treatment but aims to improve future patient care.
You can withdraw from the study at any time.

Who may be eligible?

To be part of this study, you would need to be 18 years or older. Researchers are looking for people who are family members of someone with Fuchs' Dystrophy or who have very early signs of the condition themselves. It's important that you understand what the study involves and are happy to agree to take part.

There are some reasons why you wouldn't be able to join. For example, if you have other eye conditions that could cause similar problems, or if you've already had eye surgery like a corneal transplant. Also, if you currently have clear swelling in your cornea or if cognitive issues mean you can't understand the study information properly, you wouldn't be able to participate.

Quick self-check

Are you 18 years old or older?
Do you have a family member with Fuchs' Dystrophy OR have you been told you have very early signs of the condition?
Do you understand what the study involves and are you willing to provide samples and attend appointments?
Do you NOT have other eye conditions that could cause similar problems?
Have you NOT had previous eye surgery like a corneal transplant?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part in this study, you'll need to attend scheduled appointments at a study site. During these visits, eye specialists will give you a thorough eye examination. This will include tests like checking your vision, looking at your eyes closely with special microscopes (slit lamp, specular microscope), and using advanced scanners (Scheimpflug tomography, anterior segment OCT) to take detailed pictures of your cornea. You will also be asked to provide a sample of blood or saliva for genetic testing. The study is designed to follow participants over several years, meaning you would have follow-up visits to track any changes in your eyes over time. The exact number and frequency of visits will be explained to you, but there are no medications involved in this observational study.

Potential risks and benefits

Taking part in this study won't directly improve your Fuchs' Dystrophy, but the information collected could help future patients by leading to a better understanding of the condition and more effective, personalised treatments. The blood or saliva sample collection is generally very safe, with minimal discomfort. Eye examinations involve looking at your eyes with bright lights and getting detailed scans, and are routine tests for eye conditions. You are always free to change your mind and withdraw from the study at any point, without needing to give a reason, and this will not affect your usual medical care.

Locations (1)

University College London
London, United Kingdom· Recruiting

Common questions

What is Fuchs' Dystrophy?

Fuchs' Dystrophy is an eye condition where cells in the clear front part of your eye (the cornea) gradually stop working properly, which can lead to blurry vision.

Why is this study important?

This study aims to understand how Fuchs' Dystrophy develops over time and how it's linked to our genes, which could help create better treatments in the future.

Will I receive treatment as part of this study?

No, this is an 'observational' study, meaning researchers are only watching and collecting information. You won't receive any treatment for Fuchs' Dystrophy during the study.

What kind of tests will I have?

You'll have detailed eye examinations with special cameras and scanners, and you'll provide a blood or saliva sample for genetic testing.

How long will I be involved in the study?

The study plans to follow people over several years, with regular visits to see how your eyes change over time.

How to find out more

Siyin Liu, MBChB

siyin.liu@ucl.ac.uk +44207 253 3411 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.