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Current UK Projects |
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The following ophthalmologists and vision science researchers are looking for volunteers to take part in nystagmus research:
* The Nystagmus Network has provided funding for research projects in Plymouth, Cardiff and Leicester Universities. |
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Click on one of the links below to jump to a project: |
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Cardiff 
Jon Erichsen, Cardiff University
Cardiff University Cardiff University set up a Research Unit for Nystagmus in 2003 and is working on several projects. The University's School of Optometry and Vision Science is looking for volunteers to take part in these projects. If you would like information about taking part, please contact Matt Dunn dunnmj1@cardiff.ac.uk or Jon Erichsen ErichsenJT@cf.ac.uk. Null Point Research (Cardiff) The Nystagmus Network has awarded a grant to Cardiff University's Department of Optometry and Vision Science to explore aspects of the null point. The benefits of the study will include furthering our understanding of the consequences of nystagmus in real-world situations, especially in terms of the additional time needed to complete visual tasks. The study will provide a basis for the better design of workstations, desk layouts and the working environment for people with nystagmus, by establishing the optimum positioning of tasks for individuals with nystagmus. Matt Dunn 
Matt Dunn
My name is Matt Dunn; I'm a UK based optometrist who has recently rejoined the Research Unit for Nystagmus at Cardiff University as a postgraduate research student after a year in practice. My work will be primarily concerned with the 'time to see' aspect of nystagmus. Visual acuity as measured with a letter chart is clearly not an accurate measure of visual performance in nystagmus; acuity remains essentially the same regardless of the speed of eye movement if given enough time to see. I hope to describe more accurately the visual difficulty faced when eye movement increases; for example, in times of stress. If you would like to volunteer for one or more of my studies or simply would like more information, please contact me at dunnmj1@cardiff.ac.uk or by telephone at (029) 2087 0556. I would be very grateful to anyone willing to lend their time. 
(L-R) Phil Jones, Dr Jon Erichsen, Matt Dunn
To find out more about nystagmus research in Cardiff go to http://www.cardiff.ac.uk/optom/research/researchunits/run/research-unit-for-nystagmus-run.html |
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Leicester 
Leicester reseracher Frank Proudlockwith NN honorary president Vivien Jones Leicester University "Treatment of congenital nystagmus with medication" By Professor Irene Gottlob, Department of Ophthalmology, University of Leicester Staff at the University have found that medication can improve the vision in some people with nystagmus. They have conducted a study to compare the effect of two different drugs in congenital nystagmus and also a placebo (pills that contain no active drugs). Genetics Research (Leicester) (see above) Prevalence Research (Leicester) How many? We should soon have an answer to that age-old question: "How common is nystagmus?" Leicester University is creating a "nystagmus register". The Nystagmus Network is part funding this important project which will survey one million people in the Leicester area. The aim is to find out how many people have nystagmus. This is being done by asking hospitals, doctors and other professionals how many people they know with nystagmus. We hope to have the results some time next year. Our best estimate at the moment is that between one in 1,000 and one in 3,000 people has nystagmus. In the UK, for example, that would work out at somewhere between 20,000 and 60,000 people. That's a pretty wide range. I know I'm not the only one who would like a more accurate answer than that, and not just because I'm curious to know. There are a number of potential benefits. If we know how many people have nystagmus, it should make it easier to encourage more research. We'll also be to see over time whether nystagmus is becoming more or less common or staying roughly the same in terms of numbers. That information could be useful in a number of ways, for example when looking at the causes of nystagmus. Most important of all, knowing how common nystagmus is will help us to ensure that everyone has the best medical help and treatment available, as Irene Gottlob, Professor of Ophthalmology at the University of Leicester, explains: "The register will not only let us know the number of people with nystagmus but also help us to know how many people have the best treatment and care. The next step will be to improve care." If you live in the Leicester area are not sure whether you are on the register, email ig15@leicester.ac.uk now. BRAIN WAVES. Leicester University is also using brain-scanning equipment to investigate what goes on in our heads when our eyes move. For further information, again, please contact ig15@leicester.ac.uk. |
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London 
Barry Seemungal
Acquired Nystagmus research Researchers at Imperial College, London, are investigating how to help people with Acquired Nystagmus (AN) by studying people with Congenital Nystagmus (CN). Consultant neurologist Barry Seemungal and his colleagues hope to discover why people with CN (also known as Early Onset Nystagmus) are usually free of dizziness and visual world motion (oscillopsia), which are major problems for those with AN due to conditions such as multiple sclerosis. The study involves looking at how the brains of people with CN work when viewing different scenes in an MRI scanner. Imperial College will reimburse volunteers for travel and food and in addition will compensate volunteers for their time spent. To find out about taking part in this project, please contact Yuliya Nigmatullina on 020 331 35527 or by email yuliya.nigmatullina09@imperial.ac.uk or Barry at b.seemungal@imperial.ac.uk |
Dr. Julie McClelland
Dr. Kathryn Saunders
Natasha Healey|
Plymouth 
Professor Chris Harris
Plymouth University Professor Chris Harris, our scientific adviser, is a vision scientist at the Institute of Neuroscience in Plymouth University. Chris is interested in both the effects of nystagmus and in improving our understanding of the mechanism of nystagmus. You can find out more about his work at www.harrislab.com The Nystagmus Network is funding the following research at Plymouth: A Biopsychosocial Study of Congenital Nystagmus. Much has been written on the medical aspects of nystagmus and there is a growing literature on the educational effects of this condition. However, there is a dearth of research on the social aspects of this condition. What is it really like to live with this condition every day? What does having nystagmus mean to those affected by it? The aim of this study is to attempt to answer these questions by exploring the social impacts of nystagmus on the lives of people with this condition. Hopefully this study will raise awareness of nystagmus in public and professional communities. Chris and his colleagues surveyed the membership of the Nystagmus Network for this project in 2004. The questionnaires produced a wealth of quantitative and qualitative data which they have presented at NN Open Days. They are also serialising the key findings of their research in our quarterly newsletter, which is sent to all members of NN. Nystagmus Mechanisms. Separately Chris is examining what exactly has gone wrong with our vision and why. We know that in many cases nystagmus has a sensory cause, such as a problem with the optic nerve. However, we don't know precisely how and why such problems result in nystagmus. Chris would like to build up a list of potential research volunteers in south-west England and can be contacted at C.M.Harris@plymouth.ac.uk. |
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Southampton 
Southampton researchers
The University of Southampton and Southampton General Hospital are home to one of the leading nystagmus research centres in the UK. One of their special areas of interest is the genetics and cellular pathophysiology of nystagmus. In 2007 NN awarded a £10,000 grant to enable researchers in Southampton to continue their genetics research. This work builds on the discovery in 2006 of the first gene for nystagmus - FRMD7. Researchers Professor Andrew Lotery, Jay Self and their colleagues are now trying to discover how this gene is involved in causing nystagmus. They are also looking for other genes which may cause nystagmus. Nystagmus is not always caused by a gene, but genetics could well explain many cases of nystagmus which are currently labelled as "idiopathic" (no known cause). In the longer term, understanding the genetics and pathophysiology of nystagmus also holds out the possibility of treatment. The Southampton research team is particularly interested in families where several people have nystagmus, but anyone with nystagmus can take part. Usually all that you need to do is give a sample of saliva or a mouthbrush sample (small children). If you would like to consider helping with this research, or you have any questions about it, please contact Jay by email at J.E.Self@soton.ac.uk. |
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Worldwide We're UK based, so this website focuses on what's going on here, but we will bring you news of any major developments elsewhere. The only other national nystagmus support group we know of is the American Nystagmus Network at www.nystagmus.org. We suggest you look there for information about what is happening in the USA Any researchers, either in the UK or elsewhere, who would like to be listed here or want help in finding volunteers, should email: john.sanders@nystagmusnet.org |
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