Duane Syndrome

One of the nerves that controls how the eye moves outwards (the sixth nerve) doesn't form properly. The connections of another nerve (the third nerve) can also be affected, causing trouble with inward movement.

In rare cases Duane syndrome is inherited. If so, it’s due to a faulty gene (CHN1).

People with Duane syndrome find it very hard to move the affected eye outwards towards the ear. When they try, the eyelid opening gets wider. It may also be hard to move the eye inward towards the nose.

Most people with Duane syndrome only have eyes that look in different directions (a strabismus) when looking to one side. If so, they can compensate with a subconscious turn of the head and avoid it.

About 3 in 10 people with Duane syndrome will have other conditions too, such as being born deaf or having problems with their backbone (spine).

Duane syndrome is not progressive so it doesn’t get better or worse.  Most people with Duane syndrome don't need treatment because they can compensate by turning their head.  If it's not possible to compensate with a head turn, or if the head turn that works means people have to hold their head in a difficult position, then surgery may be needed.

The missing nerve cannot be replaced, so the aim of surgery is to move the affected eye to a more central position. This makes it easier to use a smaller head turn to get the eyes to fix on the same spot at the same time. Surgery cannot make eye movement easier.

Fight for Sight researchers helped to identify one of the genes (CHN1) that is faulty in Duane syndrome, and research is centred on studying the way that nerve cells grow during development. The aim is to understand enough to begin developing a treatment.

You could play an important part in eye research by being a participant in clinical research study that may benefit many people. You could even help shape clinical research by becoming more actively involved and having a say. Patients, carer, or anyone with an interest can help.

What are clinical trials

Clinical trials are research studies that find out if a medical strategy, treatment, or device is safe and effective for humans. They are a key research tool for improving medical knowledge and patient care. The people who carry out research are mostly the same doctors and healthcare professionals who treat people. Their aim is to find better ways of treating patients and keeping people healthy.

Taking part

Here are some ways to find out about research projects and clinical trials that you can get involved in.

UK Clinical Trials Gateway

The UK Clinical Trials Gateway run by the National Institute for Health Research (NIHR) provides easy to understand information about clinical research trials running in the UK, and gives to a large range of information about these trials. It is designed to enable patients and clinicians to locate and contact trials of interest. Visit their website and select the eye condition that you are interested in.

NIHR Clinical Research Network Portfolio

The NIHR Clinical Research Network Portfolio is a database of high-quality clinical research studies in England, Northern Ireland, Scotland and Wales. Within this the Ophthalmology Specialty Group supports a national portfolio of research studies in ophthalmology and the vision sciences. See their website for details.

If you wish to join a trial it is always best to discuss this with your doctor or clinical team first.