Tag: NUKE

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.

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

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.”

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 Points.

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

NUKE logo

Next steps for NUKE

Your chance to influence the direction of UK nystagmus research

NUKE is the Nystagmus UK Eye research group. Members are currently researchers, clinicians, academics and patient support groups, including, of course, the Nystagmus Network.

Mission Statement

NUKE brings together the leading clinical and scientific expertise, experience and resources across the UK. Supported by patient groups we work to raise the profile of nystagmus and attract research funding. By collaborating and sharing data and ideas we aim to achieve the best possible clinical outcomes for patients, including the development of a Nystagmus Care Pathway.

As work on the Nystagmus Care Pathway is now complete, pending approval by the Royal College of Ophthalmologists, NUKE plans to work on a new project. We would like to hear your views on where to focus our energies.

To voice your priorities for nystagmus research in the UK for the next two years, please take part in this short survey. Thank you.

NUKE research priority survey here

A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study

The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”

Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.

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