Guest post by Jamie Enoch, Researcher at School of Health Sciences at City University London
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You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today.
“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.
“This survey will help us enhance our knowledge on how clinical tests can be improved to detect additional eye conditions in patients who already have nystagmus. The survey should take 5-6 minutes to complete. All answers are anonymised and will be kept confidential.”
The Nystagmus Network is today hosting the UK Nystagmus Research Workshop 2019 at the School of Optometry and Vision Sciences, Cardiff University. Delegates are joining us from the 6 UK centres of nystagmus research excellence. These are:
The School of Optometry and Vision Sciences, Cardiff University
The Ulverscroft Eye Unit, University of Leicester
Moorfields Eye Hospital, London
The Royal Eye Infirmary, Plymouth
The Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
The University of Southampton and Southampton General Hospital
All delegates will also be attending the Nystagmus Network Open Day 2019 at the Principality Stadium, Cardiff on Saturday.
On Jeans for Nystagmus Genes Day 2019, the Nystagmus Network is sharing news, published this week, of a recent study, by the Netherlands Institute for Neuroscience, identifying the cause of a particular form of nystagmus.
The type of congenital horizontal nystagmus associated with stationery night blindness has been found to be caused by mutations in the retina, rather than arising from the brain stem, as was originally thought.
Potentially, we may need to rethink the cause of more types of congenital nystagmus and therefore investigation of any potential treatment.
Maarten Kamermans, group leader at the Netherlands Institute for Neuroscience, says: “This discovery means that targeted searches for treatments are now possible.”
The Nystagmus Network will continue to work in close partnership with research teams in the UK and further afield and keep the nystagmus community informed.
You can read the full published article in the Medical Express online, here.
You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today.
“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.
“This survey will help us enhance our knowledge on how clinical tests can be improved to detect additional eye conditions in patients who already have nystagmus. The survey should take 5-6 minutes to complete. All answers are anonymised and will be kept confidential. “
At the recent celebration for Professor Irene Gottlob at the University of Leicester, Dr Frank Proudlock spoke about nystagmus and reading.
Frank commented that people with congenital nystagmus can read at the same speed as fully sighted people, provided the print is large and clear enough, that the intensity of the nystagmus does not affect reading speed, but that children with nystagmus take longer to acquire words and will need to reread new words more often. He also reported that, whilst some children say they help, in tests there seemed to be no significant advantage in using coloured overlays for reading.
Read a May 2019 article on nystagmus and reading, here.
The Nystagmus Network trustees publish today their Research Strategy document for the next 3 years of nystagmus research, collaborations and funding arrangements.
CLICK HERE to download your free copy today.
Read more about nystagmus research, here.
Today Nystagmus Network’s Sue and Sara are travelling to Leicester University to attend a day of celebrations. We shall be marking 20 years of ophthalmology in Leicester and, in particular, the work of Professor Irene Gottlob.
The programme for the day, at the Ulverscroft Eye Unit, includes a range of presentations on various eye conditions, including, of course, nystagmus.
Dr Helena Lee, University Hospital Southampton, will speak on her trials using oral Levodopa to rescue retinal morphology and visual function in a murine model of human albinism.
Dr Mervin Thomas, University of Leicester, will present on the development and clinical utility of a diagnostic nystagmus gene panel using targeted next-generation sequencing.
Sohaib Rufai, Clinical Fellow at University of Leicester, will explore whether handheld OCT can predict future vision in infantile nystagmus.
Leah Haywood, University of Leicester, will discuss facial recognition in infantile nystagmus.
Dr Frank Proudlock, University of Leicester, will talk on reading in infantile nystagmus.
Hear Dr Rubina Ahmed from Fight for sight and Sue from Nystagmus Network talking about their brand new jointly funded nystagmus research grant in this excerpt from RNIB Connect Radio.
The call for the joint Nystagmus Network / Fight for Sight £250k award to undertake a three year nystagmus research project, is now open.
Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a post-doctoral researcher for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”
This investment comes as a direct response to an appeal by the nystagmus research and clinical experts attending the UK nystagmus research workshop 2018, hosted by the Nystagmus Network.
The deadline for abstract applications is 11 July 2019.
