People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition.
The team at the University of Sheffield behind the Nystagmus Information Pack would like your help to review the pack and improve care and information services for nystagmus patients.
You can take part by completing an online questionnaire from the safety of your own home.
Guest post from Saima Begum, University College London
I am a student at University College London, studying at the Institute of Education and I am emailing to ask for your help with my Masters research project into Vision Impairment.
This project aims to examine technology use in young people with vision impairment, and whether this influences their educational attainment.
There is much research that has found that technology such as screen-readers on phones have been useful for people with vision impairment to be able to function in everyday life, so my project is aiming to look at whether technology use can also have positive effects on education.
Moreover, because of the increasing use of social media, I plan to look at whether technology use can have a positive effect on friendships. This data is important to collect as it will show how young people with VI use technology, and how this could be utilised so they perform better in school.
Participants are invited, between the ages of 11 and 18.
All questionnaires can be completed online, and participants can do this from the comfort of their own homes.
The questionnaire is accessible for screen readers. The first page of the questionnaire also includes an information sheet with more details regarding the project.
Ifigeneia Manitsa BEd, MSc, AFHEA (pictured) is a Psychology Researcher at Kingston University London. Her research is about the social and academic inclusion of adolescents with and without visual impairments.
Ifigeneia has a Degree in Primary Education and a Masters in Special Education. Visual impairment has been her field of expertise for the past 7 years.
Her latest study is on the social relationships that sighted and visually impaired adolescents, aged 12-14 years, who attend mainstream schools or mainstream schools with special resourced provision, develop with their teachers and peers and the impact of these relationships on their school grades and classroom participation. An outline of the project is below.
Sighted and visually impaired adolescents aged 12-14 years will be asked to complete 3 questionnaires:
ademographic questionnaire
a questionnaire on the social relationship they have developed with their favourite teacher
a questionnaire on the social relationship they have developed with their closest friend in school
These questionnaires will take approximately 30-45 minutes. The main researcher is going to ask the questions and adolescents will answer them. The teachers the adolescents nominate as their favourite ones will be asked to complete a questionnaire on these students’ academic inclusion (test grades and classroom participation). This will take approximately 15 minutes to complete and they can do it in their own time. Additionally, we would like to have access to the academic grades that students have received in English, Maths and Science in their last report. Their teachers can share these with us and we will, of course, ask for parents’ and students’ permission.
The adolescents who participate in this study may have a visual impairment, but no learning or cognitive disabilities.
The questionnaires can be completed by phone, email, Skype or post.
If you would like to know more about the study or Ifigeneia’s work, please contact us.
If you would be interested in taking part in the study, please complete the form below. Thank you.
Here’s a research participation opportunity thanks to our friends at Fight for Sight.
“We’re launching an online survey to help demonstrate the personal impact of sight loss. We’re inviting everyone affected by sight loss or an eye condition – either personally or indirectly via someone they care for – to participate in the survey and to strengthen the case for urgently needed eye research funding.
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.
Yet despite the evidence, the scale of this growing health challenge is not being taken seriously. We need the input of those affected by sight loss to demonstrate its impact and to secure more funding for pioneering eye research.
How to get involved
We’d love you to take part in a short 15-minute interview or online survey, sharing information and answering questions on how living with sight loss or an eye condition impacts on your life.
Please fill in the following short questionnaire, registering your interest in taking part in our survey. This should take less than five minutes. When the full survey takes place in early 2020, you 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 your access needs.
Please register your interest through a short questionnaire by clicking this link.“
Guest post by Jamie
Enoch, Researcher at School of Health Sciences at City University London
Are you a UK-based relative, friend or caregiver of someone living with a visual impairment? Do you have 10-15 minutes to spare? If yes, please consider taking our survey on your experience of support services.
Thank you.
Find out more and
take part in the survey by clicking here.
Every Thursday on our Facebook page we publish the latest news on nystagmus research or publish details of new nystagmus trials that you can take part in.
We are currently supporting these trials:
The Southampton University Hospital team need to find people with albinism and nystagmus, aged over 60 so that Mr Jay Self and his colleagues can discover why people with albinism seem to be immune from AMD (Age-related Macular Degeneration).
The Cardiff University team are looking for children with congenital nystagmus aged from 6 months to 10 years, with our without Downs Syndrome, so that they can find out more about how vision develops in young children.
The Moorfields/UCL team, under Mr Vijay Taylor, are recruiting adults with congenital ideopathic nystagmus, between the ages of 18 and 50, to investigate the phenomenon known as ‘visual crowding’ associated with nystagmus.
Don’t miss your chance to take part in research and read the latest nystagmus-related news!
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Maria Theodorou, Consultant Ophthalmologist at Moorfield’s Eye Hospital, London gave the following presentation:
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Professor Jonathan T. Erichsen, DPhil, Professor of Visual Neuroscience,School of Optometry and Vision Sciences at Cardiff University gave the following presentation:
Meanwhile, Jon’s colleague, Asma Zahidi, a researcher with the School of Optometry and Vision Sciences at Cardiff University, was recruiting to her latest study into Characteristics and Impact in Children with and without Down’s Syndrome. This is a joint project between the Research Unit for Nystagmus (RUN) and the Down’s Syndrome Vision Research Unit.
Delegates at Open Day were able to sign up to take part in the study and also try the eye-tracker machine which Asma had kindly brought along.
