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:
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


For further information, please contact the Nystagmus Network
Email: [email protected]
Tel: 01427 718093
Nystagmus Network website
Royal College of Ophthalmologists Practice Points
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

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