research – Page 5 – Nystagmus Network

Quality of Life Research

Acumen are currently organising research in the UK on behalf of a national sight loss charity to test a quality of life measure that is currently being developed. For the survey they are looking to blind and partially sighted people.

The quality of life measure will help the charity assess the ongoing wellbeing of people in relation to the services they use. All responses will help to refine the questions as necessary.

The research involves a 15 minute online survey and anybody contributing will receive £10 as a thank you for their time.

People interested in the study should follow the link below to complete the screening questions to register interest:

https://survey.researchopinions.co.uk/index.php/482932?lang=en

Acumen will then send the full survey details should people meet the criteria for the study. In this email everybody will receive a unique ID number so that they can record the response and provide the incentive upon completion.

The main criteria for people to be eligible for the study is that they are registered partially or severely sight impaired.

The Nystagmus Network has checked with Acumen that this research is backed by a bona fide institution, that there are no commercial interests and that data with be correctly stored and privacy protected.

Jon Erichsen speaks with delegates at a Nystagmus Network Open Day.

Take part in research at Cardiff University

Professor Jon Erichsen and his team from the School of Optometry and Vision Sciences, Cardiff University, Nikita Thomas, Katherine Ward and Onyeka Amiebenomo invite you to take part in nystagmus research.

Following their demonstrations at virtual Open Day 2021 of various nystagmus and eye tracking studies currently being carried out, you are warmly invited to apply to take part.

If you’re interested, please complete the form below. We will pass your details on to the Cardiff University team, who will be in touch with you.

The logos of Fight for Sight and the Nystagmus Network

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester, led by Dr Frank Proudlock, will study 4 groups of people: with albinism; with idiopathic infantile nystagmus; with achromatopsia; without nystagmus. They aim to determine the most effective way to measure glare, its impact on reading and whether tinted glasses or reading overlays can help. It’s hoped that a better understanding of the impact of glare will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

A further small grant award to Leicester

Dr Mervyn Thomas, also of the University of Leicester, has won the Fight for Sight/Nystagmus Network funded small grant award for a nystagmus related research project. The work, delayed from 2020 due to the COVID pandemic, will now start later this month.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock for his winning bid for a PhD student post. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are equally pleased to see that Mervyn Thomas has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

Nystagmus research grant funding open for applications

The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000.

The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Applications close on 5 August.

Find out more here

A poster giving details of the MEVU research and an image of a teddy bear wearing green framed glasses.

Parents invited to take part in research

Sophie Waltl (Bachelor of Occupational Therapy honours student, Australian Catholic University) is assisting with research on a new assessment that describes vision use in children – the ‘Measure of Early Vision Use’ or MEVU.

The research team are seeking specific feedback from parents / caregivers to understand whether MEVU (which was originally developed for children with cerebral palsy) can / should also be used for children with a visual impairment.

Parents of children with vision impairment aged 0-6 years are invited to complete a short online survey or take part in an online interview to discuss MEVU. The measure can’t be used with children with vision impairment until this stage of the research has been completed.

Click here to find out more and take part

Diagrammatic representation of a typical circadian rythm.

Circadian Therapeutics Sleep Health Survey

Circadian Therapeutics are seeking vision-impaired individuals between 18 – 70 years to participate in a research project exploring experiences of sleep and daily rhythm disruption.

In partnership with the Blind Veterans UK, Circadian Therapeutics is running a survey to identify sleep and circadian disruption experienced by vision impaired individuals. The purpose of this work, first launched in March 2020, is to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption. The research team are now seeking more participants.

The aim and purpose of the survey:

Sleep and biological daily rhythms (circadian rhythms) are essential to maintaining the healthy balance and functioning of the mind and body. Our master internal circadian clock coordinates our body’s daily physiological and behavioural cycles to the Earth’s solar day – including daytime alertness and sleep timing, to synchronization of changes in hormone secretion, to fluctuations in mood and cognitive ability.

Sleep and circadian rhythm disruption (SCRD) is widely experienced in our communities, with the scope of the problem often underreported. Common suffers range from teenagers, new mothers and shift workers, to individuals with depression and the severely Vision Impaired, and is an underlying feature in many of the most challenging diseases of our time, including cardiovascular disease, cancer and neuropsychiatric diseases.

The Sleep and Circadian Health Survey

The aim of this survey is to identify sleep and circadian disruption experienced by Vision Impaired individuals in order to provide informed feedback to the Visually Impaired UK community about living with sleep and circadian disruption.

Taking Part

The link below provides interested individuals with a simple method to register their interest in the Online Survey and how to find out more about the study. The Survey can be completed at home or by telephone.

Register your interest in the Online Sleep Survey here

Congratulations, Dr Thomas

The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.

Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.

We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.

Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”

Congratulations, Dr Thomas!

Vision impairment and employment – a research project

Guest Post: Dr. Liz Ellis, VICTAR, University of Birmingham

The Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is conducting research to understand more about the factors which contribute to employment outcomes (the good and not so good) for individuals with a visual impairment, living and/or working in Greater London. This project is being funded by the Vision Foundation and will help to ensure their work is evidence-based and impactful.

We would like to talk with people with vision impairment who are working at the moment, those who are not working, those working in their dream job, those who are looking for a career move, those in part-time jobs, as well as those working full-time – we want to hear about a range of different experiences via an online focus group.

We would also like to talk, via an online focus group, with professionals who have experience of supporting individuals with vision impairment into employment.

Anyone who is aged 18 years or over, in Greater London and interested and able to help should click the link for more information and the option to register to participate. All participants will receive a £20 shopping voucher as a token of appreciation for their time.

For more information please contact Dr. Liz Ellis by email at [email protected]

Nystagmus does cause visual crowding – it’s official

It’s long been understood that people with nystagmus can struggle to pick out objects from an image or face in a crowd. That’s a phenomenon called visual crowding. But how does nystagmus cause this?

Now Vijay, Taylor, nystagmus researcher at London’s Moorfields Eye Hospital and University College London has shown that the eye movements associated with nystagmus are responsible.

Eye movements elevate crowding in congenital idiopathic nystagmus

Mr Taylor has been undertaking a PhD in visual crowding and idiopathic nystagmus and this month his findings were preliminarily published. He says: “I hope through my findings and investigation of nystagmus eye movements we can develop tools to improve access to education and daily tasks.”

For Vijay having his work published is ‘super exciting’.

The Nystagmus Network helped recruit research participants for the study. Thank you to everyone who took part and well done, Vijay! We’re super excited, too!

Read the publication online here

Thank you, Nikita

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). Nominated for her innovative work in perimetry, we’re sure that Nikita has a brilliant nystagmus research career ahead of her.

And now we’re not the only ones to think so. You can read all about Nikita’s nomination here: https://nystagmusnetwork.org/congratulations-nikita/

Congratulations, Nikita!

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020

Category: research