Category: News

Improving the infantile nystagmus test

Delegates at 100% Optical learned about progress on refining the way an eye movement disorder is identified in babies

Professor Jon Erichsen from the University of Cardiff gave a presentation on infantile nystagmus to eye care professionals at the recent 100% Optical event (ExCeL London, 25–27 January).  

Professor Erichsen highlighted that in the condition there are several “known unknowns.”

“One thing we don’t understand is why we can have all sorts of conditions where the nystagmus is the same even though the disease is different,” he elaborated.

He added that while treatments for nystagmus attempt to dampen oscillation in order to improve vision, it is still uncertain whether abnormal eye movements affect visual acuity.

Patients with infantile nystagmus see the world as stable despite their involuntary eye movements, Professor Erichsen shared.

Experiments aimed at assessing a patient’s visual acuity in the absence of involuntary eye movements came to a surprising conclusion.

“Acuity in the absence of visual motion is unchanged,” Professor Erichsen highlighted.

To illustrate this point, he shared the case of a patient with infantile nystagmus who received surgery that dampened her eye movements.

“By reducing eye movements, what we may be doing is increasing the contrast sensitivity function which is why patients are reporting that their vision is better” University of Cardiff’s Professor Jonathan Erichsen 

The patient reported being able to see better, although objective measures of her visual acuity had not changed.

Professor Erichsen shared that contrast sensitivity rather than visual acuity may be a better way of assessing treatments in infantile nystagmus.

“By reducing eye movements, what we may be doing is increasing the contrast sensitivity function which is why patients are reporting that their vision is better without the movements,” Professor Erichsen observed.

Read the full report on Professor Erichsen’s presentation in Optometry Today, here.

Alison Leary

Alison joins the Nystagmus Network

We are delighted to announce that Professor Alison Leary MBE has joined the Nystagmus Network as a trustee.

After spending 10 years in science Prof. Leary undertook an RN diploma at The Nightingale School at St Thomas Hospital (now Kings College London). She attained a Masters in Biomedical Science (Haematology) and worked in acute Haematology services. Prof. Leary obtained a PhD in Clinical Medicine from the University of London (Royal Free & University College School of Medicine).

In recent years she has undertaken various projects around the modelling of complex systems in both the public and private sector and has a particular interest in the work of specialist practice and its value. She undertakes research in this area. She also provides a service as an expert witness.

Prof. Leary writes regularly for the general, trade and academic press. She is the clinical lead for the matchday medical service at Millwall FC. In 2015 she was made a Fellow of the Royal College of Nursing and in 2016 a Fellow of the Queen Nursing Institute and a Winston Churchill Fellow for which she examined high reliability organisations looking at safety. She has worked in league football for over 20 years and in 2019 received an MBE for modelling spectator safety.

Trustees standing together.

Daniel joins the Nystagmus Network

The Nystagmus Network has appointed Daniel Williams, sight loss campaigner and founder of Visualise Training and Consultancy, to its committee of Trustees.

Chair of the charity’s trustees, Tim Cuddeford said: “We are delighted to welcome Daniel to the committee as he brings a comprehensive overview of the sight loss and optical sectors and first-hand knowledge of the challenges living with a visual impairment can bring. As a well-connected young entrepreneur with a strong social media presence, he will also help us to raise the profile of the Nystagmus Network and the support services we offer.”

Daniel said: “I feel honoured to be part of a small charity that has the potential to support so many people with nystagmus. My younger brother was diagnosed with the condition at the age of one and, as an advocate for the sight loss sector, this appointment will help towards my aim of making the world more inclusive for people with visual impairments through increased opportunities and personal development.”

To find out more about Daniel’s visual impairment training and consultancy services, please visit Visualise Training and Consultancy. 

A young child's eyes.

How well will my child see?

Researchers from the University of Leicester have identified a new way of predicting the future vision of children with infantile nystagmus. The research, published in the journal Ophthalmology has developed a grading system for retinal development in infants and young children with the condition, providing an important tool for ophthalmologists to determine their future vision.

This new research, funded by Fight for Sight and the Nystagmus Network, highlights for the first time that we can use this existing grading system to predict future vision in children and infants with nystagmus. Importantly, it is more reliable than the current tests used.

Infantile nystagmus is a condition of involuntary (or voluntary, in some cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. It affects approximately one in 500 people. Due to the involuntary movement of the eye, it has also been called “wobbly eyes”, and often comes with a negative social stigma.

Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.

With the advent of hand-held optical coherence tomography (OCT) – a non-invasive imaging test that uses light waves to take cross-sectional images of the retina – healthcare professionals are now able to obtain detailed information about the status of retinal development in young children and infants. These scans can be obtained in a few minutes and can be performed non-invasively in children.

In 2011, lead researcher, Dr Mervyn Thomas, had developed a grading system based on optical coherence tomography (OCT) for arrested retinal development and found that this system is able accurately to predict the prognosis of vision in children and adults with arrested retinal development.

Dr Mervyn Thomas, said “This study required a lot of patience and cooperation from our nystagmus patients and families. The result is now we have a validated method of predicting prognosis in children and infants with infantile nystagmus. This will allow clinicians to plan better for patients whose vision is likely to be worst affected by nystagmus, while also helping to reassure and enable patients and families to optimise the development and educational attainment of the child during this crucial, formative stage.”

Fight for Sight’s Head of Research and Policy, Dr Rubina Ahmed, said “This grading system is a positive step towards better care for children with infantile nystagmus and will help to allay concerns of parents with unanswered questions related to visual development and prognosis for their children and may in future lead to better care plans for individuals.”

Sue Ricketts, Executive Information and Development Manager at Nystagmus Network, said “This development highlights the importance of research investment in nystagmus diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?”

This research was jointly funded by Fight for Sight and Nystagmus Network via the Small Grant Award, awarded to Dr Mervyn Thomas and Professor Irene Gottlob.

Funding research into blindness

Please listen to the ‘In Touch’ programme on BBC Radio 4 to catch Head of Research at Fight for Sight, Dr Rubina Ahmed and Professor Chris Hammond talking about the launch of their new 2020 campaign.

During the show, they’ll discuss the ‘1 to 20’ funding gap – only 1% of public funding is dedicated to treating sight loss despite 20% of people being affected by serious sight loss in their lifetime – and why they’re calling for an increase in funding for eye research.

Listen here

To read more about the Fight for Sight campaign, please click here

Adam Hills: Take His Legs

This Friday evening at 11.30pm on Channel 4, straight after The Last Leg, you can catch a documentary following the comedian and Last Leg co-host, Adam Hills as he embarks on a personal, physical and emotional journey to live out his boyhood dream to play competitive rugby league. The film charts the story of the birth of Physical Disability Rugby League in the UK, and the rise of the Warrington Wolves PDRL team. Travelling to Australia, the side play the South Sydney Rabbitohs at the ANZ Stadium at the first ever International Club Challenge – and even get the chance to meet movie star and Rabbitohs owner Russell Crowe. Their aim is to go from open trial to world champions in just six months.

Also featured in the film is Community rugby coach and friend to the Nystagmus Network, Wil Maudsley.

Both Wil and Adam coached children at the charity’s recent Open Day held at the Principality Stadium, Cardiff.

Fight for Sight launches survey to gather insights on personal impact of sight loss

GUEST POST

Fight for Sight is launching an online survey to gather broader insights into the personal impact of sight loss and eye conditions. The charity invites those affected by sight loss – either personally or indirectly via someone they care for – to participate in the survey and strengthen the case for urgently needed eye research funding.

The survey comes in response to shocking findings that sight loss costs the UK over £28 billion each year, yet only 1% of funding for public services is spent on eye research. This equates to just £20 for each person living with sight loss.

Fight for Sight believes that despite the evidence, the scale of this growing health challenge is not being taken seriously. Determined to change this and to build a case for more eye research funding, Fight for Sight desperately needs the input of those affected by sight loss to demonstrate its impact and to secure more funding for pioneering eye research.

Fight for Sight’s Chief Executive, Sherine Krause, said:

“In launching this survey, we hope to gather some valuable insights into the impact sight loss can have on those living with it. Unfortunately, sight loss is viewed by many people as inevitable. But we know its impact – for many people – can be devastating, from both a personal and financial perspective.

“We’re determined to build a case to demonstrate this, in order to be able to fund life-changing research. Fight for Sight’s pioneering research has already led to transformational treatments and our science is on the verge of future cures. With more funding, we hope to radically reshape the future for everyone affected by sight loss.”

Participation in the survey involves a short 15-minute phone interview or online survey in which respondents share information and answer questions on how living with sight loss or an eye condition impacts their life or that of the person they care for.
Interested participants should fill in the following short questionnaire to register their interest in taking part: https://www.surveymonkey.co.uk/r/TG2PRLX, which takes less than five minutes to complete, or call 020 7264 3900.

When the full 15-minute survey is launched in early 2020, those who have registered their interest will be contacted and invited to take part in a 15-minute online survey. The survey can also be done over the phone if this better suits access needs.
To register interest in taking part, please complete this short questionnaire by following this link: https://www.surveymonkey.co.uk/r/TG2PRLX or call 020 7264 3900.

Participants can really help to transform the eye research landscape and build a case to secure urgently needed funding for pioneering eye research projects.

-ENDS-

Contacts:

Alice Mitchell, Senior Media and Communications Officer; Direct line: 020 7264 3917; E-mail: [email protected]

About Fight for Sight

Fight for Sight is the leading UK charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.

The charity currently invests over £8m in 160 research projects at 49 different universities and hospitals across the UK.

The organisation’s research covers both common and rare eye diseases and conditions including age-related macular degeneration, glaucoma, inherited eye diseases and those linked to other conditions like stroke and diabetes.

Over the course of Fight for Sight’s history the charity’s achievements include:

  • the creation of the corneal transplant service
  • new treatments to save the sight of premature babies
  • research leading to the world’s first clinical trial of gene therapy treatments for choroideremia, an inherited condition that causes blindness in men
  • the design of a new eye test that can detect the early stages of sight loss in age-related macular degeneration
  • the identification of new genes responsible for glaucoma, retinitis pigmentosa, keratoconus and other corneal disorders
  • supporting the development of Peek, a Portable Eye Examination Kit that uses a unique smartphone-based system for eye testing anywhere in the world

Fight for Sight social media:

Facebook: https://www.facebook.com/fightforsightuk

Twitter: https://twitter.com/FightforsightUK

Instagram: @fightforsightuk

Mervyn smiles for the camera.

Handheld OCT can predict future vision in infantile nystagmus

Dr Mervyn Thomas of the Ulverscroft Eye Unit, University of Leicester developed a grading system for arrested retinal development as a med student in 2011. 8 years later the team shows it can predict future vision in preverbal children with nystagmus.

This development highlights the importance of research investment in diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?

Read the full article from the American Academy of Ophthalmology here.

Seeing Beyond the Eyes project wins Vision UK John Thompson Award for Excellence in Services, Support and Care 2019

The Nystagmus Network is delighted to share news of the success of Visualise Training’s Seeing Beyond the Eyes Project. Visualise Training’s, Founder, Daniel Williams, was our keynote speaker at Open Day 2019.

Vision UK, the umbrella organisation which leads collaboration with partners across the eye health and sight loss sector recognised the ground-breaking work being done by the Seeing Beyond the Eyes team recently at their joint conference between the RSM GP with Primary Health Care Section, Vision UK and in association with the RSM Ophthalmology Section and Digital Health Section.  

The team faced stiff competition from 5 other nominees in their category so were delighted when it was announced that they’d been awarded The Vision UK John Thompson Award for Excellence in Services, Support and Care 2019, one of the new thematic awards at this year’s event.

The team’s achievements in bringing the optical and sight loss support sectors together to benefit patients with visual impairments has been impressive since the project’s launch in May 2018. 60 interactive Continuing Education and Training (CET) workshops have been delivered throughout England and Scotland empowering over 4,500 optometrists and dispensing opticians to better support their patients living with sight loss and forge closer links with local and national support services. Feedback from delegates has been excellent and referrals are increasing.

Project lead and founder of Visualise Training and Consultancy Daniel Williams stated “We are delighted to win such a prestigious award but it is vital that we continue our education programme as there is still so much more to be done to ensure patients receive signposting and referrals for support as soon as they get a suspected and life changing diagnosis.

It is estimated that over 50% of sight loss is preventable, but it is still increasing so engagement between the optical and sight loss support sectors is more important than ever to help minimise the financial and emotional impacts for patients. Therefore, we are determined to reach all 21,000 UK optical clinicians but need help from the optical and sight loss sectors in terms of funding, venues and resources to achieve this so please contact me if you can assist.”

To find out more about the Seeing Beyond the Eyes project and book your free workshop place, visit  https://www.eventbrite.co.uk/o/visualise-training-and-consultancy-17222888162 or email [email protected]

The picture shows the Seeing Beyond the Eyes team. L-R Peter Black, Gill Perry, Daniel Williams, Jayshree Vasani