RecruitingNAINTERVENTIONAL

Biofeedback in Idiopathic Infantile Nystagmus Syndrome

This study is exploring a new treatment called biofeedback training (BT) for children and young people aged 5 to 17 who have Infantile Idiopathic Nystagmus (IIN). IIN is an eye condition where the eyes make constant, uncontrolled wobbly movements, which can affect vision. BT is a technique that aims to teach people how to better control their eye movements. Researchers want to see if this training can help these children improve their vision and eye stability. The study will also help create guidelines for how to best use this new approach for people with nystagmus in the future, aiming to improve their quality of life.

At a glance

Status

Recruiting

Phase

Sponsor

Monica Daibert Nido

Enrolment target

Start

30 Jan 2019

Estimated completion

30 Dec 2027

Low Vision in Children

What is this study about?

This study is looking into a condition called Infantile Idiopathic Nystagmus, often shortened to IIN. If your child has IIN, it means their eyes make constant, wobbly movements that they can't control perfectly. While some children with IIN don't need treatment, others find it makes their vision less clear or causes them to tilt their head to see better. For these children, finding ways to help their eyes become more stable is really important.

Traditionally, treatments for IIN might involve things like eye surgery, special glasses, or medicines. These all try to help the eye muscles work together better to keep the eyes steadier. However, a different approach called 'active eye movement control training' has been used for a long time to help people with other types of vision problems. The exciting part is that new technology now means we can use this kind of training, called biofeedback training (BT), for children with nystagmus.

Biofeedback training uses special equipment to help people learn to control parts of their body they might not normally think about, like their eye movements. It's like giving your eyes a workout, teaching them to be more stable. This study wants to see how well biofeedback training works for children with IIN and if it can truly help them improve their vision and control their eye movements. The results could lead to new ways of helping many more children with nystagmus in the future, making a real difference to their daily lives.

Key takeaways

This study explores a new way to help children with wobbly eyes (IIN).
It uses a training method called biofeedback to help improve eye control.
Children aged 5-17 with IIN are invited to take part.
The study aims to improve vision and create better treatment guidelines.
Participation involves eye assessments and training sessions.

Who may be eligible?

To join this study, children and young people need to be between 5 and 17 years old. They must have a clear diagnosis of Infantile Idiopathic Nystagmus (IIN) and be able to follow simple instructions when looking at pictures or listening to sounds.

There are certain reasons why someone might not be able to join. For example, if they have other eye problems not related to their IIN, or if their eyes have something blocking the view, which would make the special testing difficult. Also, this study is specifically looking at IIN, so children with other types of nystagmus or those who find it hard to take part in tests and training wouldn't be able to join.

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.

Is your child aged between 5 and 17?
Has your child been diagnosed with Infantile Idiopathic Nystagmus (IIN)?
Can your child follow simple instructions for looking and listening?
Does your child NOT have other serious eye conditions unrelated to IIN?

Answer every question to see your result.

What does participation involve?

If your child takes part in this study, they will receive either biofeedback training (BT) or a 'sham' treatment, which means it will feel like training but won't have the active elements of BT. This helps researchers compare the real impact of BT. The study will involve several visits to the clinic for training sessions and assessments. During these visits, experts will measure your child's eye movements and vision. We don't have details about the exact number of visits, how long each visit will be, or the total duration of the study yet, but this information will be fully explained to you before you decide to take part. There are no medications involved in this study.

Potential risks and benefits

Taking part in a study like this could offer potential benefits, such as a chance to improve your child's eye control and vision with a new therapy. It also contributes to our understanding of IIN, helping future patients. There are no known serious risks with biofeedback training, but your child might find the training sessions tiring or need to concentrate hard. You and your child have the right to withdraw from the study at any time, for any reason, without it affecting your child's medical care.

Locations (1)

CNIB
Verified postcode
Toronto, Canada· Recruiting

Common questions

What is Infantile Idiopathic Nystagmus (IIN)?

IIN is a condition where a child's eyes make constant, uncontrolled wobbly movements, which can affect their vision.

What is biofeedback training?

Biofeedback training is a technique that uses special equipment to help people learn to better control parts of their body, in this case, their eye movements.

Will my child definitely receive the new treatment?

Children in the study will be randomly assigned to receive either the active biofeedback training or a 'sham' (inactive) version to compare results fairly.

What is a 'sham' treatment?

A sham treatment looks and feels like the real treatment but doesn't have the active components. It's used to see the true effects of the main treatment.

How long will the study take for my child?

The detailed length of the study, including visits and training, will be explained fully if your child is eligible and you're considering joining.

How to find out more

Monica Daibert-Nido, MD

monica.nido@uhn.com 4164819995 Official trial record

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