nystagmus research – Nystagmus Network

A patient is having their vision tested at an optical practice.

Measurement of visual function in infantile nystagmus: a systematic review

As a member of NUKE, the Nystagmus UK Eye Research group, the Nystagmus Network is delighted to see the publication of a literature review of functional vision testing for Infantile (Congenital) Nystagmus. The authors are Bader Almagren, NUKE and Matt Dunn.

NUKE sees this as a step towards establishing vision testing in cases of nystagmus which more closely measures what people living with the condition actually see.

Read the full article online at the BMJ/BJO here

Background/aims Recent work has called into question the ability of visual acuity (VA) to accurately represent changes in visual function in infantile nystagmus (IN). This systematic review investigated factors affecting visual performance in IN, to guide development of suitable alternatives to VA.

Methods Included studies used an experimental manipulation to assess changes in visual function in people with IN. Interventional studies, case series and case studies were excluded. Six databases were searched in August 2023. Selection, detection, attrition and measurement bias were assessed. Due to heterogeneous methodologies, narrative synthesis was undertaken.

Results Eighteen relevant papers were identified, 11 of which complied with the review criteria. Articles were grouped according to the factor manipulated to evoke within-participant changes in performance (motion blur, psychological state, gaze angle or visual crowding). Optotype, image, grating and moving stimuli have been employed under varying lighting conditions and exposure duration.

Conclusion Several factors affecting visual performance should be considered when assessing visual function in IN. While maximum VA is a useful metric, its measurement deliberately minimises nystagmus-specific factors such as changes in visual performance with gaze angle and the ‘slow to see’ phenomenon. Maximum VA can be measured using the null zone, providing unlimited viewing time, reducing stress/mental load and minimising visual crowding. Gaze-dependent functional vision space is a promising measure which quantifies the impact of the null zone but does not consider temporal vision. Although no complete measurement technique has yet been proven, this review provides insights to guide future work towards development of appropriate methods.

An eye care practitioner is testing a patient's eyes using a RETeval device.

Take part in research for shorter waiting lists

Jay Self is Associate Professor at the University of Southampton and a long-term supporter of the Nystagmus Network. He is a nystagmus researcher and eye doctor and is asking us for help with a new research project. Please take part if you can.

Often people with nystagmus (and other eye conditions) have to wait weeks, months or even years to get a diagnosis and much of this is due to NHS waiting lists for specialist tests.

Jay and his team have studied the use of a hand-held device (RETeval®) which can help diagnose many eye conditions and, importantly, can be used in any eye department, anywhere in the country meaning shorter waiting times.

The work so far has found that the device, used as a screening tool, could mean that patients no longer have to wait so long for some very specialist tests called Electroretinograms (ERGs) and Visual Evoked Potentials (VEPs).

They now want to run a large study and need help from people who have been through eye services to advise from a patient’s eye view.

Involvement would mean taking part in a TEAMS or ZOOM meeting a couple of times a year to offer your opinions. Attendance is voluntary, of course.

If you would like to help, please email Mr Self and his team at [email protected] and they will be in touch when the meetings are planned.

Thank you for your help.

This research is supported by Gift of Sight and by the Nystagmus Network who purchased the RETeval® device.

The Concise Practice Point for managing nystagmus in childhood, published April 2023

Publication of Concise Practice Point for managing nystagmus in childhood

PRESS RELEASE, Thursday 5 October 2023

The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Concise Practice Point, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.
The Practice Point can be found online at this link:
https://www.rcophth.ac.uk/resources-listing/managing-nystagmus-in-childhood/
The Nystagmus Network contributed to the development of the Practice Point through its membership of NUKE, the Nystagmus UK Eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.
Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing
improvements in developing standardisation of medical diagnosis and care.”

Clinician Jay Self, University of Southampton, an author of the
Practice Points and founding member of NUKE said “Managing children with nystagmus can be complex and nuanced. By sharing best practice, in an easy to follow guide, we hope to improve all aspects of care for children and their families.”
Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Point.

Watch the CPP Launch video on our YouTube Channel here

Ends

For further information, please contact the Nystagmus Network
Email: [email protected]
Tel: 01427 718093
Nystagmus Network website
www.nystagmusnetwork.org
Royal College of Ophthalmologists Practice Points
https://www.rcophth.ac.uk/resources-listing/managingnystagmus-
in-childhood/
NUKE members include
Gemma Arblaster, University of Sheffield
Matt J. Dunn, Cardiff University
Jonathan T. Erichsen, Cardiff University
Helen Griffiths, Sheffield Children’s NHS Foundation Trust
Chris Harris, Royal Eye Infirmary, Plymouth & University of Plymouth
Helen Kuht, University of Leicester
Helena Lee, University of Southampton
Rebecca McLean, University of Leicester
Lee McIlreavy, Cardiff University
Frank Proudlock, University of Leicester
Sue Ricketts, Nystagmus Network
Jay E. Self, University of Southampton
John Sanders, Independent Patient Representative
Fatima Shawkat, University Hospital Southampton
Maria Theodorou, Moorfields Eye Hospital
Mervyn Thomas, University of Leicester
Nikita Thomas, Cardiff University
Katherine Ward, Cardiff University
J. Margaret Woodhouse, Cardiff University

A poster promoting participation in the University of Sheffield interview research on paediatric services.

New low vision study calls for participants

Are you aged between 16 and 25?
Have you accessed UK-based eye clinic and low vision services as a child or young adult?
If so, a team at the University of Sheffield would like to invite you to take part in a research project.
They want to understand the impact of paediatric low vision clinical services from the patient’s point of
view. You can talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary by email at [email protected]
or follow this link

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

Call for research grant applicants

The Nystagmus Network is delighted to announce that we are again partnering with Fight for Sight this year to offer the Small Grant Award Scheme. The grants are available for clinical research addressing visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing/analysis or treatments.

We are delighted to inform you that the scheme is now open for applications, with the deadline of 13:00 on Wednesday 13 September 2023.

This year we particularly welcome applications from Early Career Researchers.

Small Grant Awards are intended to support early career research, which should be used to collect preliminary/pilot data to make research ideas more competitive when developing larger follow-on funding applications. These awards offer competitive funding of up to £15,000 to clinical or research scientists to conduct stand-alone research projects for up to 12 months.
Please visit the Fight for Sight website for more details, including in depth guidance, and to access the online grant management system.
For any queries during the process, please email [email protected].

You can contact us if you require any additional information, and we look forward to working with you through the process.

A close up of someone wearing eye test glasses and the words 'Funding visual impairment a landscape view'.

A new report highlights the need for more investment in sight research

Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.

The key headlines of the report:

Our message

Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss.
Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss.

Philanthropy context

At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies.

Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector.
Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth.
We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term.

Policy context

The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.

Facts about visual impairment

More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%).

About this research

This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value.

Download the full report here

A person wearing a doctor's white coat is testing a patient's eyes using clinical equipment.

The Fight for Sight/Nystagmus Network Small Grant Award

We are delighted to announce that the Nystagmus Network has jointly awarded two new nystagmus research grant awards with our funding partners Fight for Sight.

The two successful applicants are

Dr Mahesh Joshi at the University of Plymouth is carrying out a pilot study to investigate whether a new computer-based treatment approach can help improve vision for people with nystagmus.
Dr Mervyn Thomas at the University of Leicester is developing a new experimental model that could pave the way for the development of new treatments that can help improve vision for children with nystagmus.

Vivien Jones, Hon President of the Nystagmus Network and Chair of the Research Committee, said: “We are delighted to announce with our partners Fight for Sight our support for these exciting research projects. The work by Dr Mahesh Joshi and Asma Zahidi at Plymouth will hopefully significantly enhance knowledge about eye movements and, in the case of Dr Mervyn Thomas at Leicester, lead to an enhanced ability to test treatments for infantile nystagmus.”

To help ensure that the Nystagmus Network can continue to invest in nystagmus research, please consider making a donation to our research fund. Thank you.

Donate to our nystagmus research fund here

L-R Peter Greenwood, Marsha De Cordova MP (holding Nystagmus Network T-shirt, Harshal Kubavat.

Nystagmus Care Pathway published

Publication of Clinical Practice Points for managing nystagmus in childhood

The Nystagmus Network has welcomed the publication of new guidance on the management of nystagmus in children by the Royal College of Ophthalmologists.
The purpose of the Clinical Practice Points, now available on the Royal College website, is to provide a single point of reference for busy clinicians when managing patients with this complex eye condition.

The Practice Points can be found online here

The Nystagmus Network contributed to the development of the Practice Points through its membership of NUKE, the nystagmus UK eye research group. Members of NUKE worked together to develop a Nystagmus Care Pathway which sets guidelines on diagnosis and care for patients with nystagmus – the first time such guidelines have been created for this condition.

Vivien Jones, founder and Honorary President of the Nystagmus Network, said “The adoption of these guidelines means that clinicians can now refer to them when treating patients with nystagmus – something that we hope will lead to continuing improvements in developing standardisation of medical diagnosis and care.”

Coinciding with the publication, Nystagmus Network trustees met Marsha De Cordova MP, who chairs the Eye Health and Visual Impairment All Party Parliamentary Working Group. Trustees were able to brief the MP, who herself has nystagmus, on the future impact of the work that has been done and the publication of the Practice Points.

Marsha is pictured above (centre) with Nystagmus Network trustees Peter Greenwood (left) and Harshal Kubavat (right).

A young person choses a book from a shelf.

Could you help shape the direction of eye research in the UK?

Eye Research Priority Survey

Your input is needed 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. Knowledge from having experienced your own eye health care, or the eye health care of others, is of great value to researchers. The survey feedback will inform the final “Top 10” updated priorities across different eye subspecialties.

The Nystagmus Network is keen to see Paediatric Ophthalmology and Neuro ophthalmology prioritised.

The survey can be accessed via the QR code below, using a Smartphone or other device which connects to the internet:

Or click here to take the survey

*https://www.jla.nihr.ac.uk/priority-setting-partnerships/sight-loss-and-vision/top-10-priorities/