research – Page 4 – Nystagmus Network

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

Care givers survey

Participants needed for research into the effects of the pandemic on those caring for and supporting people living with a visual impairment

The Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London are looking for volunteers, aged 18 or over, who provide care and support to an individual living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you are invited to complete a questionnaire about your experiences and views about how the pandemic affected you as a caregiver for an individual living with a visual impairment. The questionnaire is written, and the responses are required, in English. The questionnaire in available on line here.

If you prefer, Word document attachments of the questionnaire can be e-mailed to you or a paper version is available.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part,
please contact: Liz Frost at [email protected]

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2022-0840).

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.

#Symposium2022

Researchers, clinicians and students working in the field of nystagmus research are invited to attend this free international event, hosted by the Nystagmus Network on Friday 24 June 2022.

Abstracts submissions

If you would like to deliver a 15 minute presentation on your work in nystagmus, please submit an abstract. We welcome topics leading to the advancement of our understanding of nystagmus, including (but not limited to) diagnostics, genetics, treatments and therapies, management and support.

300 words max
no later than 30 April email: s[email protected]

Successful applicants will be required to deliver a 15 minute presentation of their work, in person or online, and be prepared to answer questions. Presentations should be in PowerPoint.

Registration

Delegates are invited to attend in person or online. There is no registration fee, but please note that you are required to cover all your own expenses if attending in person. Please register below. Thank you

Please note that this event is strictly for researchers, academics, clinicians and students in the field of nystagmus research only – thank you.

Register here for Symposium2022

A graphic of Mike dressed as the wiggly eyed warrior.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.

somoene selecting a book from a library shelf

What’s your nystagmus research question?

The Nystagmus Network has been investing in research since the 1990s.

Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.

In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of electronic testing providing ever more accurate clues to the causes and likely impact of nystagmus.

Optical, medical and surgical treatments have also been developed to improve both the vision and the quality of life.

There has been much to celebrate.

But, despite some emerging signs of potential early interventions, sadly, prevention and cure still seem a long way off.

We need more research!

To kickstart more nystagmus research, we need two things: money and a good research question.

You can help us!

Tell us which aspect of life with nystagmus you think researchers should examine as a priority to achieve the greatest impact on people living with the condition by submitting your research question today. We will collate all your responses and put them to researchers in a bid to start some new nystagmus research.

Your research question should be:

Focused on a single aspect of life with nystagmus
Researchable using primary and/or secondary sources
Feasible to answer within a reasonable timeframe
Specific enough to answer thoroughly
Complex enough to attract academic interest
Relevant to the lives of people living with nystagmus

Please use the form below to submit your nystagmus research question.

The deadline for submissions is 31 March

Alternatively, you can make a donation to the Nystagmus Network research fund to help us continue to push the boundaries of scientific investigation.

Donate to the nystagmus research fund here

A blurred image of people walking in the street

Does nystagmus affect perception of movement?

A new study by a team of researchers at the University of Melbourne, published in January 2022, set out to assess the effect, if any, of nystagmus on the perception of movement. Scientists also sought to establish whether those effects changed when the null point was in play.

People with nystagmus were tested both using their null point and not using it. People without nystagmus were tested using both their central gaze and an off centre gaze. They were presented with movement both up and down and side to side.

Their conclusions?

The trial showed that incoherent motion perception (seeing the general direction of movement, such as when a flock of birds is in flight or a crowd of people walking in the street) was impaired in those participants who had congenital or infantile nystagmus, to the same degree in both the horizontal and vertical directions.

The null position was not found to provide significantly better motion perception, although there was a trend towards better horizontal perception at the null position than 15 degrees away from it.

The findings could help to understand better how people with nystagmus perform daily visual activities and assist in developing new clinical visual function assessment tools for nystagmus patients. Compared to static visual acuity, motion perception can be examined to assess the real-life visual function of nystagmus more thoroughly. Questions related to visual motion perception can also be added to quality of life surveys to assess more closely real-life related visual function in nystagmus.

Read the full scientific article online here

Predicting the sight of an infant with nystagmus

Thanks to recent nystagmus research work, there is now an answer to many a parent’s question ‘How well will my child be able to see?’

A team of researchers has found a correlation between the development of the fovea and visual acuity. The development of a foveal grading system means that doctors can confirm with some certainty how well the child will eventually be able to see.

Read the full scientific paper online here

Take part in research

Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London

People with a visual impairment needed for research into the effect of the pandemic on people living with a visual impairment

We are looking for volunteers, aged 18 or over, who are living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.

As a study participant, you have the option to complete one or two online questionnaires about your experiences and views, one is about how the pandemic affected you and your wellbeing, the other asks about the effect on your Low Vision support services. There are options of an e-mailed Word document or paper version of the questionnaire if required.

If you are not able to answer the questions on line, computer / tablet / smartphone or on paper but would like to take part, please e-mail [email protected] with your phone number and she will contact you to arrange to help you to complete the questionnaires over the phone.

Questionnaires would be expected to take 10 – 15 minutes to complete.

In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.

For more information about this study, or to volunteer to take part,
please contact: Liz Frost at [email protected] or –

To take part in the questionnaire about the effects on your wellbeing click on this <link>.

To take part in the questionnaire about the effects on your LV support services click on this <link>.

You are welcome to take part in either or both of the questionnaires.

This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2021-2175).

If you would like to complain about any aspect of the study, please contact the Secretary to the Senate Research Ethics Committee on 020 7040 3040 or via email: [email protected]

City, University of London is the data controller for the personal data collected for this research project. If you have any data protection concerns about this research project, please contact City’s Information Compliance Team at [email protected]