research – Nystagmus Network

Please help Asmaa with her research

Asmaa is a postgraduate research student at the University of Sheffield. She’d love you to take part in her current study. Here she is to introduce it:

“Hi, I’m Asmaa, an eye doctor from Egypt. Throughout my career, I’ve met a lot of people with low vision for whom we have minimal low vision clinical and support services. My passion to help them and start a low vision clinic at my University Hospitals in Egypt has led me to Sheffield to explore the available services for young people with low vision here in the UK, so that I can help my patients when I return home. Your experience with these services and your ideas for service improvement will help me a lot with my new service in Egypt.”

“If you are interested in sharing your experience in an online interview, and you are aged between 16 and 25, please contact me:

[email protected]

or just follow the link below to indicate your interest and I will email you our research study details.

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

You can also read our study announcement below just in case you need more details.”

Your experience matters and would help us improve low vision services for children.If you are a vision-impaired person, aged between 16 and 25,
and have accessed UK- based eye clinic and low vision services as a child or young adult, we would like to invite you to take part in a research project.We want to understand the impact of paediatric low vision clinical services from your point of view. We would like to invite you to talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary

[email protected]

Or follow this link:

https://docs.google.com/forms/d/1-kz2UapQ_HsTbO8Vnk8Eycy3W_zY5ZsZlZBLsiCTtGA/edit

An eye care practitioner is testing a patient's eyes using a RETeval device.

Take part in research for shorter waiting lists

Jay Self is Associate Professor at the University of Southampton and a long-term supporter of the Nystagmus Network. He is a nystagmus researcher and eye doctor and is asking us for help with a new research project. Please take part if you can.

Often people with nystagmus (and other eye conditions) have to wait weeks, months or even years to get a diagnosis and much of this is due to NHS waiting lists for specialist tests.

Jay and his team have studied the use of a hand-held device (RETeval®) which can help diagnose many eye conditions and, importantly, can be used in any eye department, anywhere in the country meaning shorter waiting times.

The work so far has found that the device, used as a screening tool, could mean that patients no longer have to wait so long for some very specialist tests called Electroretinograms (ERGs) and Visual Evoked Potentials (VEPs).

They now want to run a large study and need help from people who have been through eye services to advise from a patient’s eye view.

Involvement would mean taking part in a TEAMS or ZOOM meeting a couple of times a year to offer your opinions. Attendance is voluntary, of course.

If you would like to help, please email Mr Self and his team at [email protected] and they will be in touch when the meetings are planned.

Thank you for your help.

This research is supported by Gift of Sight and by the Nystagmus Network who purchased the RETeval® device.

University students studying together in a library.

Making university life better for visually impaired students

Research participation opportunity

Developing university guidance for the socio-emotional needs of students with vision impairment

PARTICIPANT INFORMATION

You are invited to take part in a research project conducted by the Institute for Mental Health, the University of Birmingham. This research work is led by Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health.

Before you decide, it is important for you to understand why the research is being done and what it will involve. This Information Sheet will tell you about the purpose of the research, along with its potential risks and benefits.

If you agree to take part, we will ask you to sign a Consent Form. If there is anything that you are not clear about, we will be happy to explain it to you. Please take as much time as you need to read it. You should only consent to participate in this research study when you feel that you understand what is being asked of you, and you have had enough time to think about your decision.

It is up to you to decide whether or not to take part. If you decide to take part, you are still free to withdraw at any time during your participation in this study and without giving a reason. If you have any further questions, please contact Dr Ifigeneia Manitsa at [email protected]. If you have any medical/other problems which make it difficult for you to read this information, please contact Ifigeneia for a verbal explanation of the research. If you choose not to take part at all or decide to withdraw your data, you will not be paid for your participation.

When you are happy that you have all the information you need to be able to decide whether or not you would like to take part in the study, please complete the enclosed consent form and return it to Dr Ifigeneia Manitsa at [email protected].

Current Study

The Institute for Mental Health at the University of Birmingham in collaboration with the Vision Impairment Centre for Teaching and Research (VICTAR), Kingston University, University of Edinburgh, Abertay University and Bristol Sensory Support Service are conducting research to understand more about the university experiences of individuals with vision impairment who are currently enrolled and pursuing a university degree (undergrad, masters, and doctoral students) and/or have recently (within the last five years) completed a university degree in the UK. This research project is also looking at the experiences of professionals from national organisations (e.g., consultants and habilitation officers) and university staff (e.g., academics and disability officers) supporting students with vision impairment in Higher Education. This project is funded by the Thomas Pocklington Trust Grants Programme.

What do I have to do?

This study will consist of two phases. First, we would like you to complete a short demographic questionnaire and participate in an online interview with us via Microsoft Teams in September/October 2023 (Phase 1). The online interview will last approximately one hour, and you will be asked to talk about your experiences in Higher Education and what type of support you are receiving (or received) during your university degree. We would also like to hear your ideas and suggestions for how universities might better support students with vision impairment in the future. Then, our research team will need some time to analyse the data that we will collect during Phase 1.

In Phase 2 that will run from February to April 2024, we would like to conduct three online 60-minute sessions with 4-6 students with vision impairment. Researchers will ask some questions and you will be able to share your thoughts and experiences about the support you receive with others in these online sessions. You will also be asked to discuss the findings of Phase 1 and discuss the socio-emotional support that should be provided to people with vision impairment in Higher Education. In addition, during these online group sessions, the research team may ask you to discuss the mental health and wellbeing guide provided by Thomas Pocklington Trust for students who want to go to university (https://www.pocklington-trust.org.uk/student-support/university/mental-health-and-wellbeing/). The transition guide “Your future, your choice: bridging the gap” developed by RNIB and VICTAR (https://media.rnib.org.uk/documents/Your_Future_Your_Choice_Bridging_the_Gap.pdf) and some of its online resources may also be used and discussed during these online sessions. You may also wish to follow up comments that other people have said and to ask your own questions. You do not have to answer every question, nor should you feel pressurised to talk.

Considering we can only recruit up to 4-6 students with vision impairment for our online group sessions, we will have to give priority to the students who contact us first. Furthermore, you can decide to only participate in Phase 1 if you do not wish to participate in Phase 2.

We will also be conducting focus groups with people with professionals who work in UK universities to support students with vision impairment.

How will the things I say be used?

Overall, this research project aims to explore the lived experiences of students with vision impairment in Higher Education and to identify the lack of holistic and person-centred approaches to the socio-emotional needs of individuals with vision impairment wishing to attend HE in the UK. This project also aims to initiate the development of university guidance that will address their socio-emotional needs and educational inclusion.

After each session, a summary report with the main findings will be sent to you. Descriptions of research findings will be published in newsletters of the professional support groups and educational institutions involved. In addition, we will publish the findings from the study in scientific journals and will present the results at relevant conferences. No names and identifying information will be published in any reports and future publications. A full report will be submitted to the Thomas Pocklington Trust who may wish to upload it on their website. All of your personally identifiable information will remain anonymous and confidential.

We will video record the focus groups so that we have an accurate recording of the discussion.

Most participants enjoy taking part in research however if this brings up unwanted feelings and you wish to talk it over potential sources of advice are:

The Samaritans – phone: 116 123; email: [email protected]

Citizens Advice – www.citizensadvice.org.uk

RNIB Helpline – 0303 123 999

Will what I say be anonymous?

In our publications and reports your responses will be anonymised but in rare cases where someone knows you very well others may be able to recognise you. Also, the other participants in the online group sessions will hear your responses. We will remind participants that what is said during these sessions must not be discussed outside these online group sessions; however, this relies on everybody sticking to this rule. Further, if you choose to use your camera during the teams call, you may be visually identifiable. You can choose not to turn on your camera if you prefer.

If, during the course of the interview, you inform us that you or someone you know is at serious risk of harm, we will take the appropriate advice and act accordingly.

What should I do if I change my mind?

During the course of the online group session, you can leave at any time by clicking on the ‘leave meeting’ button. Your data will not be included in the research.

If after taking part in an online interview and/online group session you decide that you no longer wish to take part in the project, please email the project lead Ifigeneia Manitsa ([email protected]) and we will remove and permanently delete your data. You must do this within one week of taking part in both tasks (online interview and online group session) otherwise we will not be able to remove your data as we will have begun to analyse it.

Where will data be stored?

The data collected will be kept in locked or password protected storage at the University of Birmingham or held on a password protected database. All information gathered about you will be stored separately from any information that would allow someone to identify who you are (this is known as personal identifying information, e.g., your full names, your address, your contact details). Your personal identifying information will be stored on a local password-protected server and only members of our research team will have access to it. We will only be able to trace the information we have collected about you back to you using a special reference number which we will store in a password protected database held at the University of Birmingham. Only members of our research team will have access to that database. Personal identifying information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 2018 and the General Data Protection Regulation (GDPR) 2018.

Do I get anything for taking part?

In Phase 1, as a token of appreciation for your time you will receive a £20 payment.

In Phase 2, you will receive a £20 payment after each online group session (three payments in total).

If you need a carer present during the interviews to support you, then an additional payment of £10 will be offered to your carer for assisting you during the interview process.

What will happen to the data afterwards?

The information that you provide will be stored on a local password-protected server and only members of the research team will have access to it. All personal details will be kept separately from the information collected. Participants will be identified by a unique number so that it will only be possible to connect results to individuals via this number. This will ensure that results are kept anonymous.

At the end of the study, your personal details will be destroyed unless you tell us otherwise. This means that we would no longer be able to trace the results of your assessments back to you. It is optional for you to be contacted by the same research team for future ethically approved research of similar nature. If you agree, the research team will contact you according to your preference via phone or email. If you agree to be contacted for future studies, you do not give consent to future studies. This option does not impact on the participation of this study or any future study. This database is password protected and only approved members of our research team have access to your details. We do not share your details with anyone outside the research team.

What happens if I decide that I no longer want my details on the database?

All you would need to do is contact Ifigeneia, the Principal Investigator of the study, at [email protected]. Your details will be removed from the database immediately.

Consent

After having read all the information and having received appropriate responses to any questions that you may have about the study you will be asked to give your consent to participate in the study if you decide that you do wish to participate. We need to receive consent from you in order for you to participate.

Withdrawal

You are free to withdraw from the study within 7 days from taking part in the one-to-one interview (Phase 1) and each online group session (Phase 2). Should you choose to withdraw from Phase 1, you can also request that any data collected from your participation be withdrawn from the study. If you request this, any data collected from you will be located and destroyed. However, once each online group discussion is complete (Phase 2), we will be unable to destroy any of your data. However, we will exclude them from the analysis. Even if you decide to withdraw from the study, you will still receive your compensation.

What if there is a problem?

If you have a concern about any aspect of this study, you should ask to speak to the researchers who will do their best to answer your questions. Please contact the Principal Investigator Ifigeneia Manitsa at [email protected] in the first instance. If you remain unhappy and wish to complain formally, you can contact: Professor Ed Wilding; Head of School; School of Psychology, University of Birmingham, Birmingham, B15 2TT, by email: [email protected] or by phone on 0121 414 4931.

Review

The study has been approved by the Science, Technology, Engineering and Mathematics Ethical Committee.

Further information

If you would like any more information about the study, please contact the Principal Investigator Ifigeneia Manitsa at [email protected].

Research team

Principal Investigator: Dr Ifigeneia Manitsa, Research Fellow in Youth Mental Health, Institute for Mental Health, School of Psychology, University of Birmingham, [email protected]

Co-Investigator: Dr Rachel Hewett, Associate Professor, School of Education, University of Birmingham

Co-Investigator: Dr Fiona Barlow-Brown, Associate Professor, Department of Psychology, Kingston University London

Consultant: Professor John Ravenscroft, Moray House School of Education and Sport, IETL, University of Edinburgh

Consultant: Dr Mhairi Thurston, Senior Lecturer, School of Applied Sciences, Abertay University

Consultant: Dr Joao Roe, Head of Sensory Support Service, Bristol City Council

A person is undergoing a sight test in a clinic.

Research participation opportunity in Cambridge

This study aims to look at how the brain behaves in response to changes in vision. There will be two visual examination tasks: one which involves a standard vision chart displayed on a computer screen and the second which involves a microperimetry exam to assess visual field sensitivity. There will also be two behavioral computerised tasks. All of the tasks have been approved and validated by the ethics committee as well as previous researchers who have used these methods. None of the tasks involve any risk and we are offering travel expenses of up to £50 per person to Cambridge. The research will take place at the Vision and Eye Research Institute at Young Street in Cambridge and the tasks should take no longer than 60 minutes. Only one visit will be required.

To take part, please contact Natalie Assaf by email at [email protected]

A poster promoting participation in the University of Sheffield interview research on paediatric services.

New low vision study calls for participants

Are you aged between 16 and 25?
Have you accessed UK-based eye clinic and low vision services as a child or young adult?
If so, a team at the University of Sheffield would like to invite you to take part in a research project.
They want to understand the impact of paediatric low vision clinical services from the patient’s point of
view. You can talk about your experiences in a Google Meet interview.
The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.

For more details, contact Asmaa Elgohary by email at [email protected]
or follow this link

Research participation opportunity in Plymouth

Perceptual Learning for Nystagmus

We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.

Who are we looking for?

Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus

What will you be doing?

Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks

Who are we?

Dr Mahesh Joshi

Dr Asma Zahidi

For more information, please contact: [email protected] or [email protected]

Travel Expenses

We will be paying your travel expenses to Plymouth up to £50.

Call for research grant applicants

The Nystagmus Network is delighted to announce that we are again partnering with Fight for Sight this year to offer the Small Grant Award Scheme. The grants are available for clinical research addressing visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing/analysis or treatments.

We are delighted to inform you that the scheme is now open for applications, with the deadline of 13:00 on Wednesday 13 September 2023.

This year we particularly welcome applications from Early Career Researchers.

Small Grant Awards are intended to support early career research, which should be used to collect preliminary/pilot data to make research ideas more competitive when developing larger follow-on funding applications. These awards offer competitive funding of up to £15,000 to clinical or research scientists to conduct stand-alone research projects for up to 12 months.
Please visit the Fight for Sight website for more details, including in depth guidance, and to access the online grant management system.
For any queries during the process, please email [email protected].

You can contact us if you require any additional information, and we look forward to working with you through the process.

A close up of someone wearing eye test glasses and the words 'Funding visual impairment a landscape view'.

A new report highlights the need for more investment in sight research

Nystagmus Network’s Sue is proud to have played a small part in the work behind a new report, published by NPC today, into the lack of funding for visual impairment.

The key headlines of the report:

Our message

Funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss.
Eyesight is the sense people fear losing the most. Many consider it to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss.

Philanthropy context

At present, most money goes to services which improve quality of life – just 3% goes to research. These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies.

Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams. More philanthropic funding therefore has the potential to make a huge difference in this sector.
Giving more to medical research and systemic change needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity. There’s plenty of room for growth.
We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term.

Policy context

The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare.

Facts about visual impairment

More than two million people in Britain live with sight loss severe enough to significantly impact daily life, with the number expected to double by 2050. Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%).

About this research

This research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. It examines what the NHS and local government are already doing, and where philanthropy can add value.

Download the full report here

A person wearing a doctor's white coat is testing a patient's eyes using clinical equipment.

The Fight for Sight/Nystagmus Network Small Grant Award

We are delighted to announce that the Nystagmus Network has jointly awarded two new nystagmus research grant awards with our funding partners Fight for Sight.

The two successful applicants are

Dr Mahesh Joshi at the University of Plymouth is carrying out a pilot study to investigate whether a new computer-based treatment approach can help improve vision for people with nystagmus.
Dr Mervyn Thomas at the University of Leicester is developing a new experimental model that could pave the way for the development of new treatments that can help improve vision for children with nystagmus.

Vivien Jones, Hon President of the Nystagmus Network and Chair of the Research Committee, said: “We are delighted to announce with our partners Fight for Sight our support for these exciting research projects. The work by Dr Mahesh Joshi and Asma Zahidi at Plymouth will hopefully significantly enhance knowledge about eye movements and, in the case of Dr Mervyn Thomas at Leicester, lead to an enhanced ability to test treatments for infantile nystagmus.”

To help ensure that the Nystagmus Network can continue to invest in nystagmus research, please consider making a donation to our research fund. Thank you.

Donate to our nystagmus research fund here

A young person choses a book from a shelf.

Could you help shape the direction of eye research in the UK?

Eye Research Priority Survey

Your input is needed 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. Knowledge from having experienced your own eye health care, or the eye health care of others, is of great value to researchers. The survey feedback will inform the final “Top 10” updated priorities across different eye subspecialties.

The Nystagmus Network is keen to see Paediatric Ophthalmology and Neuro ophthalmology prioritised.

The survey can be accessed via the QR code below, using a Smartphone or other device which connects to the internet:

Or click here to take the survey

*https://www.jla.nihr.ac.uk/priority-setting-partnerships/sight-loss-and-vision/top-10-priorities/