Nystagmus research news update from Dr Helen Griffiths at Sheffield University

Helen and her team are working on a virtual reality solution for the problematic sympton of oscillopsia in Acquired Nystagmus.
Helen writes:
“Many thanks to you all at Nystagmus Network and to your partners Fight for Sight for your support, allowing us to continue the VR project work. We have started and have been able to develop a method for the camera within the headset to record eye movements and convert this signal into the visual scene presented in VR. We are pleased with this progress so far.
I hope we can be successful in providing a method for some relief for AN.
We hope to have ethics approval for the device trial in the next 2 to 4 weeks and so I’ll be in touch about recruiting suitable trial participants.”
Nystagmus Network will post details of opportunities to take part in this and all other nystagmus research trials here.
Maria Theodorou speaks at a Nystagmus Network event.

Soft contact lenses may improve vision in adults with CIN

A pilot randomised study, led by Maria Theodorou FRCOphth, PhD at Moorfields Eye Hospital, London, funded by the Nystagmus Network/Fight for Sight, Moorfields Eye Hospital Special Trustees and the National Institute for Health Research (NIHR), has shown that wearing soft contact lenses may help people with CIN see a little better.

The purpose of the study was to see whether soft contact lenses could improve vision more than glasses and whether soft lenses were as effective as rigid ones.

38 adult volunteers with CIN wore soft contact lenses (randomly with and without corrective prescription) for 2 weeks. Observations were made around the ease and safety of wear as well as any effect on visual acuity and nystagmus waveform.

27 people successfully completed the trial, a small number having found soft contact lenses difficult to get in and out of the eye or uncomfortable to wear. On the whole, the lenses were tolerated well and a trend was identified towards an improvement in visual function after the 2 weeks.

New research project on visual crowding in CIN

A new research project is being undertaken at Moorfields Eye Hospital and University College London. The aim of the study is to understand better the visual abilities of people with congenital nystagmus, with a particular focus on visual crowding, a phenomenon which occurs when an object that is visible in isolation becomes impossible to recognise when surrounded by other objects.
The Nystagmus Network is supporting Mr Vijay Tailor, Paediatric Clinical Trials Research Orthoptist and Clinical PhD Training Fellow, to recruit suitable participants.
Subjects should have a formal diagnosis of Congenital Idiopathic Nystagmus and be aged 18 to 50.
People who also have albinism or strabismus amblyopia (‘squint’ or ‘lazy eye’) are not suited to this particular study.
If you have short or long sight, this is not a problem provided you wear prescription glasses or contact lenses to correct this.
If you would like to find out more about the research project and apply to take part then please complete and submit the form below. By completing the form you are giving us permission to pass on your details to the relevant research team.
Thank you.

Nystagmus Network and Fight for Sight fund two new nystagmus research projects

Nystagmus Network and Fight for Sight have partnered to fund research aimed at the early detection of nystagmus and improve the quality of life of those with nystagmus

Fight for Sight, the UK’s leading eye research charity, and Nystagmus Network, the foremost charity in the UK providing support and information about nystagmus, are working in partnership to fund research into a complex condition characterised by repeated involuntary movement of the eyes. Through the partnership, two research projects into nystagmus have been awarded.

Dr Lee Mcilreavy from Cardiff University will use the funding from Fight for Sight and the Nystagmus Network to determine whether a novel eye tracking approach can correctly identify the patterns of eye movement made by those with infantile nystagmus. This study could lead to a simple and child-friendly eye tracking test that does not rely on expensive technology. This has the potential to detect the condition earlier and allow children and families to receive an earlier diagnosis.

Dr Helen Griffiths, at the University of Sheffield, has been awarded funding to develop an image stabilisation technology in virtual reality (VR) to treat a troubling symptom called oscillopsia, where the individual perceives the world in a continuous and erratic motion due to involuntary movements of the eyes. She will work towards stabilising images on the retina in individuals with acquired nystagmus. A VR headset with integrated head tracking will be configured to track the direction of gaze. This data will be used to adjust the VR display in real time so that a stable view is projected onto the retina of the user, independent of eye orientation. For as long as the user wears the headset, the observed image will be stable. This alternative solution will offer relief to those who have this form of nystagmus.

Michele Acton, CEO of Fight for Sight, said: “We are pleased to be working in partnership with Nystagmus Network to fund research into this complex eye condition. Both research projects have the potential to positively impact the lives of those living with nystagmus. Only by funding research will we begin to tackle nystagmus.

”Vivien Jones, President of the Nystagmus Network and Chair of the Nystagmus Network Research Sub-committee, said: “It is a pleasure to join with Fight for Sight in making this award to Cardiff University for their plan to develop a means of diagnosing infantile nystagmus in the community setting. We hope that this award will mean the plan can be brought to fruition with all the benefits this will bring to families in terms of more accessible diagnosis.

We are also delighted to join Fight for Sight to fund a project developed by the University of Sheffield to deal with one of the most distressing symptoms that can go with acquired nystagmus – oscillopsia, where the individual perceives the world in constant motion. Sheffield propose that a way of offering relief from this is through stabilisation of the image on the retina by developing image stabilisation technology in virtual reality (VR). This would be a major breakthrough for those who acquire nystagmus in later life, and who suffer from oscillopsia.”


Research investment by the Nystagmus Network

Thanks to generous donations and income from membership subscriptions, trustees of the Nystagmus Network were able to allocate their full research budget to new and continuing nystagmus studies in 2017. Towards the end of the year an opportunity arose to fund an additional research project, likely to have a huge impact on the quality of life of people living with nystagmus. Trustees therefore decided to extend their financial commitment to research for the current year in order to initiate the project without delay. There will be a national press release to announce the detail of the new study soon.
Trustees have already agreed a further increase to their planned spend on research for 2018 in order to drive additional studies. None of this would be possible without the continuing commitment of our supporters and fundraisers and our long standing partnerships with the leading UK hospital and university teams working in the field of nystagmus.
You can help us continue to fund nystagmus research by fundraising or donating. Thank you.

Nystagmus and disability sports classification


The Nystagmus Network often hears of people struggling with the current classifications for vision impairment in sports. Since many people with nystagmus probably don’t classify with the current test we would like to invite members of the nystagmus community to take part in new research which may bring us all one step closer to inclusion in major competition.If you would like to be involved in research into classification with the IPC, please read on …

Jamie Fuller, founder of the Outspan Rebels VI ski team, has been in touch with the IPC (International Paralympic Committee) team involved in the research to adapt the way classification is done or the parameters measured.
Hikmat Subhi is leading a UK team in Cambridge, whilst another team in Canada is focusing particularly on skiing.

To take part, please contact Hikmat directly. Email at [email protected] or call 01233 698070.

Important note from the classification research team:

“We do classification research, but are independent from classifiers. So it’s important to say that people who take part receive no advantage in future classification, just as those who don’t take part would not be disadvantaged. This project is separate from what is happening for skiing, so it won’t directly change classification in skiing, though hopefully it will improve the way that the visual field is measured during classification for skiing. “


Jay Self wearing scrubs.

Research participation opportunity – albinism in the over 60s

Albinism researchers in Southampton (Jay Self and Helena Lee) would love to hear from anyone with any form of albinism who is over the age of 60. If you or anyone you know fits the bill, please read on …



Jay and Helena are seeking to understand two questions which have baffled researchers for some time and they need your help:

1.       Why has Albinism and Age Related Macular Degeneration (AMD) never been seen in the same patient when AMD affects 1/3 of people over 75? Are people with Albinism protected from this condition?

2.       Why does the retina lose function late in older animals with Albinism, but apparently not in humans?

If anyone with Albinism, who is over the age of 60, would like to help Jay and Helena find answers to these questions, please complete the form below. Thank you.


No Fields Found.

Nystagmus research update from Southampton

The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.

Each team presented news of the latest developments over the past year and highlighted work in progress for the future.

Mr Jay Self BM, FRCOphth, PhDAssociate Professor at Southampton University and Consultant Ophthalmologist at Southampton General Hospital, joined by his colleague, Dr Helena Lee, NIHR Academic Clinical Lecturer in Ophthalmology at the University of Southampton, delivered this presentation.

Jay Self
Helena Lee


Nystagmus research update from Sheffield

The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.

Each team presented news of the latest developments over the past year and highlighted work in progress for the future.

Dr Helen Griffiths, Senior Lecturer in Orthoptics at Sheffield University, delivered the following presentation:

Nystagmus research update from Plymouth

The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.

Each team presented news of the latest developments over the past year and highlighted work in progress for the future.

We were delighted to have John Sanders with us again at Open Day, this time representing the work of Professor Chris Harris, Professor of Neuroscience at Plymouth University. John has been involved with Chris’s work on the Nystagmus Care Pathway project.


Here is John’s report:

Thank you for the opportunity to say a few words about the Nystagmus Care Pathway. I’m standing in for Professor Chris Harris who has done most of the work along with his orthoptist colleagues in Plymouth.

I’d like to explain three things:

1) what the pathway is

2) why it’s a good idea

3) what stage it’s at now.

  1. Firstly – what is it?

The Care Pathway is a set of suggestions for hospital staff and other professionals about what to do when a patient has nystagmus. For instance:

  • The pathway recommends which diagnostic tests to carry out (these may differ from case to case).
  • The information to give to the family and/or patient.
  • How to minimise the impact of nystagmus and treat any associated conditions.

The professionals involved will include ophthalmologists, orthoptists and optometrists. An individual pathway may also bring in neurologists, paediatricians, imaging teams, genetic specialists, vision scientists, VI teachers, counsellors, rehab workers and others.

Basically, the Pathway is a set of minimum standards.

  1. Secondly, why do we need a Care Pathway?

The evidence gathered by the Nystagmus Network over decades suggests that, in some cases at least, what happens in eye hospitals isn’t what patients expect, especially in terms of diagnosis, support and information.

That said, we know that some hospitals provide a very good diagnostic and information service. So one aim of the Pathway is to make sure that what the best hospitals do already happens in all hospitals.

This should lead to better outcomes for everyone with nystagmus. By better outcomes we mean things like confidence, happiness, school work and ultimately life chances – as well as treatment where that may help.

So, the Pathway is a good idea because it’s what many of you want.

  1. Where are we now?

At the moment, the Care Pathway is only a proposal. We expect that BIOS, the professional body for orthoptists, will publish the proposed Pathway on its website shortly. That should get people in the medical world talking about the Pathway. And hopefully, before long, hospitals will start using it.

In the meantime an early version of the Pathway is available. Please note that the Pathway has been updated and amended since this version was published in 2015.


To sum up, the Pathway should ensure that everyone diagnosed with nystagmus has a minimum standard of care.

Or, to put it another way, we can already do a lot to help people with nystagmus. The Pathway should make sure that everyone gets that help.