Dr Rufai speaks from a podium with a large screen behind him showing slides.

Congratulations, team Leicester

Leicester research team awarded prestigious prize from the Royal College of Ophthalmologists

Image credit: Royal College of Ophthalmologists

A team of specialist eye doctors at the University of Leicester have received a national award for their work, which will improve diagnosis and management for children with nystagmus. The study was jointly funded by the Nystagmus Network and Fight for Sight.

The Royal College of Ophthalmologists has awarded the prestigious Ulverscroft David Owen prize to Dr Sohaib Rufai, NIHR Doctoral Fellow in Ophthalmology and his colleagues at the University of Leicester Ulverscroft Eye Unit.

Dr Rufai’s team were the first in the world to use handheld OCT to predict successfully the future vision of young children with congenital nystagmus.

On receiving the prize, Dr Rufai said: “It is a tremendous honour to receive this award on behalf of my team. I’m grateful to my mentors and colleagues at Leicester: Professor Irene Gottlob, Dr Mervyn Thomas and Dr Frank Proudlock. … We dedicate this prize to the wonderful children and families who supported this research.”

Read the full story on the University of Leicester website

The logo of BIOJ.

Nystagmus in Down Syndrome – a Retrospective Notes Review

Nystagmus has been reported in up to 30% of people with Down Syndrome (DS), and yet is still not well understood. This study, by a team at Moorfields Eye Hospital, aims to characterise the clinical features of patients with DS and nystagmus. It is recently published in the British and Irish Orthoptic Journal (BIOJ).

The article sheds light on the different types of nystagmus which can be present in someone who has DS and, in particular, that these can arise from a variety of causes, not always linked directly with DS.

Full clinical assessment of the nystagmus is needed in order to inform support and management of the sight.

Read the full article in BIOJ online here

Harshal Kubavat headshot.

Thank you, Harshal

The Nystagmus Network’s newest trustee, Dr Harshal Kubavat has a young child with nystagmus. Like many parents, he had never heard of nystagmus before. After supporting the charity’s work in the research space as a volunteer for some time, Harsh joined us as a trustee in November 2021. He is now a stalwart of the research committee and also serves with the awareness team, overseeing our major events, such as Open Day as well as the research workshops and Symposium2022.

Would you like to join our trustee team?

Vivien (left) and Sue shaking hands.

Thank you, Vivien

Vivien Jones is the Founder and Honorary President of the Nystagmus Network. She started the charity in 1984 to support parents like her. Her son, Sam had recently been diagnosed with nystagmus. She could find no information about the condition and resolved to change that.

Watch the story of the Nystagmus Network on video here

Today Vivien heads a charity providing support and information to parents and adults living with congenital or acquired nystagmus across the UK and around the world.

Vivien is chair of the charity’s research committee and drives investment in new research. Raising awareness also continues to be very close to her heart. She gives talks whenever she can.

This is Vivien’s account of a talk she gave just last week:

I am a friend of Sue Darney, this year’s President of the East Grinstead branch of the Soroptimists. Sue heard me talk about the Nystagmus Network and said she’d like her organisation to support the charity during her year as President. I got a very warm reception when I talked about the origins and development of the Nystagmus Network, about how things began with a consultant telling Ian and me that Sam had nystagmus when he was three months old. I recalled how Ron Mallett of the London Refraction Hospital (now the Institute of Optometry) and I agreed it would be helpful to have a patient group to avoid the kind of information black hole which we as parents had fallen into and how things progressed from there. I told them the story of Sam – including how he progressed from wearing dark glasses with black leather side-pieces to deal with his chronic light sensitivity to getting tinted contact lenses from Guy’s when he was six or seven.  Talking about Sam’s journey and the development of the Nystagmus Network always makes me get emotional – and this talk was no exception!

It was wonderful getting the support of the local Soroptimists – they couldn’t have been kinder or more supportive.

Vivien is pictured receiving a cheque for £40 from Sue Darney

The eye logo of the Nystagmus Network and the words Nystagmus Awareness Day 20 June

People’s perceptions of nystagmus and the impact of Covid-19

In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.

The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.

It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.

This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.

What this tells us, is that raising awareness of nystagmus is beneficial for everyone.

Future work
It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.

Read the full summary of the survey results online here

Gemma wearing the CROM and a clinical face mask.

Nystagmus Network funds research equipment

At the end of 2021 the Nystagmus Network invited funding applications from UK nystagmus researchers to cover the cost of equipment needed to take their work forward. This week work has begun at the University of Sheffield and Sheffield Hospital using newly funded equipment.

Orthoptist, Gemma Arblaster, from the University of Sheffield applied for a grant to purchase two different head position measuring devices. Her aim was to find a simple, accurate and clinically acceptable method of measuring head position and abnormal head postures in patients with nystagmus.

The Nystagmus Network was delighted to be able to fund the equipment, costing £549.25, thanks to the generosity of our supporters and fundraisers.

In patients with nystagmus head position is an important measurement, particularly during different tasks and different levels of visual demand. Currently in clinical practice Orthoptist or Ophthalmologist descriptions of head position and abnormal head postures are relied on. This method could be improved, and head position could be recorded and measured more accurately. 

The team at the University of Sheffield have been exploring methods of head position measurement, with an attempt to find a robust, but simple method of accurately measuring head position and head postures. Ideally this measurement would be simple to perform and non-invasive, but finding an accurate and remote method of measuring head position, suitable for clinical practice, has proved difficult. The gold standard Polhemus device was accurate, but impractical to use in a clinical setting. The depth camera (microsoft Kinect camera) was easier to use, but the data was less accurate than the Polhemus, particularly when less of the face was visible to the camera. The Kinect camera has also been commercially discontinued.

Gemma’s application was for two ‘low tech’ devices to measure head position to further both clinical and research interests in measuring head position and abnormal head postures in nystagmus. The cervical range of motion (CROM) is positioned on the head, but is considered accurate and fairly simple to use. The goniometer is an even simpler device that is placed near the head and does not need to be worn, however it can only measure in one plane at a time. Both devices offer potential to be used accurately to measure head position and abnormal head postures in patients with nystagmus, but further evidence is needed to explore their usability and support their accuracy.

Firstly, the devices will be used in the Orthoptic clinic at STH NHS FT to explore their ease of use and limitations in patients with nystagmus and abnormal head postures. Secondly, ethical approval will be gained for a research study comparing clinician descriptions of head position and abnormal head postures (current clinical practice) with measurements using the CROM and the goniometer in patients with nystagmus and abnormal head postures for other clinical reasons. The aim is to find out which method of measuring head position and abnormal head postures is the most simple and accurate in patients with nystagmus. This research will be published and the results disseminated. The plan is to apply for further funding to support research investigating and measuring head position and abnormal head posture measurement in nystagmus. This is particularly important for measuring the outcomes of interventions for nystagmus that are specifically targeted at improving head posture (such as surgery) and improving vision (such as medications).

Gemma currently has a clinical contract with STH NHS FT and a lecturer position at the University of Sheffield. This gives her a unique opportunity to undertake research in clinical populations and in student populations. The CROM and goniometer devices will be kept in the Orthoptic Department at STH NHS FT and used in patients with nystagmus for clinical and research purposes. Both devices will also be available to the University of Sheffield for undergraduate teaching and undergraduate research projects, which can only recruit participants from the volunteer student population.

This week, Gemma has begun work with the Nystagmus Network funded devices. She said:

“Thank you Nystagmus Network for funding our new head posture measuring equipment. I’m excited to start using it in the orthoptics clinic at Sheffield Hospital.”

A doctor wearing scrubs is writing on a clipboard. She is smiling at the camera.

Nystagmus affects quality of life of children and their parents, confirms new research

A team at the Eye Hospital and School of Ophthalmology and Optometry at Wenzhou Medical University in China have recently published their research on the effects of childhood cataract surgery in young children. The results show that the impact of nystagmus, strabismus and amblyopia, resulting from the cataracts, not from the surgery, have a significant impact on the quality of life of both the child and their parents, when compared to families where the child has full vision. This will come as no surprise to families living with a child who has nystagmus.

The quality of life is affected most for the child because of the impact of these eye conditions on the functional vision, meaning that they are more likely to be limited in the activities they can take part in at school and elsewhere. For parents, the most significant impact on the quality of their life is the constant worry about their child’s eyesight.

It is thought that the best solution would be to bring cataract surgery forward in these children, before the nystagmus, strabismus or amblyopia has time to develop.

Read the full article online here

A group of people wearing white coats sit in rows behind laptops with a lecturer pointing at a screen.

Eye health experts seek to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy  earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh. 

Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:

“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.

We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.”  

The survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in. The survey feedback will inform the final Top 10 updated priorities across different eye subspecialties. 

Please click here to take part in the survey. 

The survey will close on 9 August 2022. 

Take part in the survey here

Jay Self

Does albinism protect against AMD?

We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. 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 important questions, please complete the form below. Please note that by completing the form you are giving us your permission to pass on your details on to the relevant research team.

Thank you.

A speaker at a Nystagmus Network research event.

Grant funding available for nystagmus research

The Nystagmus Network / Fight for Sight joint call for a small grant award in nystagmus research, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments, is now live and open for applications.

Full details, as well as the guidance document for the applicant can be found on the Fight for Sight website.

The deadline for the call is 28 July 2022.