RecruitingOBSERVATIONAL

VIsual Cerebral ConnecTivity On Functional Magnetic Resonance Imaging in Patients With Hereditary REtinal Dystrophies

This research study, called 'VIsual Cerebral ConnecTivity On Functional Magnetic Resonance Imaging in Patients With Hereditary REtinal Dystrophies,' is looking into how the brains of people with inherited eye conditions, specifically those affecting the retina, process vision. It uses a type of brain scan called functional Magnetic Resonance Imaging (fMRI) while you are resting. The main goal is to understand the connections and activity in the parts of the brain linked to sight. This information could eventually help doctors develop better ways to help people with these conditions. The study is for adults over 18 who have an inherited retinal or macular dystrophy and would involve an fMRI scan during a routine hospital visit.

At a glance

Status

Recruiting

Sponsor

Fondation Ophtalmologique Adolphe de Rothschild

Enrolment target

200

Start

04 Jan 2021

Estimated completion

01 Jul 2028

Vision Functional Brain Networks in Patients With Hereditary Retinal Dystrophies

What is this study about?

This research study is trying to understand more about how the brains of people with inherited eye conditions handle vision. You might have heard of inherited retinal dystrophies or macular dystrophies; these are conditions that run in families and affect the light-sensitive layer at the back of your eye, called the retina, which is crucial for seeing.

The study uses a special type of brain scan called functional Magnetic Resonance Imaging, or fMRI. Don't worry, it's very similar to a regular MRI. During these scans, you'll simply be resting. The fMRI allows researchers to see which parts of your brain are active and how different areas connect with each other, especially those involved in processing what you see. By looking at these 'brain networks,' the researchers hope to learn more about how your brain adapts to or is affected by the eye condition.

Ultimately, the knowledge gained from this study could be very important. By better understanding how the brain works in people with these inherited sight problems, it might help scientists and doctors develop new and more effective ways to treat these conditions or improve quality of life for those affected in the future. It’s part of a bigger effort to improve care for people with inherited retinal diseases.

Key takeaways

The study uses brain scans (fMRI) to understand vision in inherited eye conditions.
It aims to improve future care for people with conditions like inherited retinal dystrophies.
Participation involves one fMRI scan, usually during a routine hospital visit.
You must be over 18 with an inherited retinal or macular condition to be eligible.
You can change your mind and withdraw at any time without affecting your care.

Who may be eligible?

To take part in this study, you need to be an adult, aged 18 or older. You must have been diagnosed by a doctor with an inherited retinal dystrophy or an inherited macular condition. These are eye conditions that are passed down through families, affecting the part of your eye that helps you see.

It's also important that you are able to give your clear agreement to participate. You must not have any other serious eye problem that significantly affects your vision beyond your inherited condition, or have had recent eye surgery within the last three months. You also need to be part of a social security scheme, which covers your healthcare in the UK context.

There are also some reasons why you wouldn't be able to join. For example, if you are pregnant or breastfeeding, you won't be able to participate. You also can't take part if you have anything inside your body that makes an MRI scan unsafe, like certain pacemakers or metal implants, or if you find the enclosed space of an MRI scanner too difficult (claustrophobia). People who are under legal protection measures are also not eligible.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have a doctor-diagnosed inherited retinal or macular dystrophy?
Are you able to agree to take part in the study?
Do you not have a pacemaker or other metal in your body that would make an MRI unsafe?
Are you not pregnant or breastfeeding?
Have you not had eye surgery in the last 3 months?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the main thing you'll need to do is have a special brain scan called an fMRI. This scan would be scheduled on the same day as one of your regular yearly check-ups at the eye clinic at the Rothschild Foundation A Hospital. This is to make it as convenient as possible for you, so you don't have to make an extra trip.

Before your annual check-up, you would receive an information letter and a detailed note about the study. If you're interested, the research team would discuss it with you again during your appointment. If you still agree and meet all the necessary criteria, you would then sign a consent form to formally join the study. The fMRI scan itself is a non-invasive procedure where you lie still in a scanner while it takes pictures of your brain. There are no medications involved and no additional follow-up appointments beyond your usual care. The total duration of your involvement would be the time it takes for you to have your regular appointment and the fMRI scan.

Potential risks and benefits

Taking part in this study may not directly benefit you, but the information collected could help doctors and researchers better understand inherited eye conditions, potentially leading to improved care for others in the future. The main procedure is an MRI scan, which is generally considered safe but does involve lying still in an enclosed space for a period. Some people might find this uncomfortable or feel claustrophobic. If you have any metal in your body (like some surgical clips or pacemakers), an MRI scan might not be safe for you. You are free to change your mind and withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Fondation Adolphe de Rothschild
Verified postcode
Paris, France· Recruiting

Common questions

What is an fMRI scan?

An fMRI scan is a special type of brain scan that looks at how active different parts of your brain are and how they connect with each other. It's like a regular MRI but also measures brain activity.

Will I get any results from my scan?

The study aims to gather information for research, so you won't typically receive individual results from your scan. The findings are analysed as part of a larger group of participants.

Do I have to pay to join the study?

No, you will not have to pay anything to be part of this study. All study-related procedures are covered by the research.

Will taking part affect my regular eye care?

No, participating in this study will not affect the usual medical care you receive for your eye condition. You will continue with your regular appointments as normal.

How long will the MRI scan take?

The exact duration of the fMRI scan will be explained in detail by the research team, but it's typically less than an hour and takes place during your usual hospital visit.

How to find out more

Amélie YAVCHITZ

ayavchitz@for.paris 0148036454 Official trial record

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