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.

A graphic of Mike dressed as the wiggly eyed warrior.

Our £17,000 investment in research

Nystagmus Network trustees have donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal.

The money will be used to purchase a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and 4x Cervical Range-of-Motion instruments (CROM) to measure head postures.

Patients with Nystagmus typically move their heads to access the best angle for their sight
and measuring this activity will provide further data to study this condition.

The new equipment will be used in both clinical and research settings and enable the Southampton team to access further research funding.

Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”

Trustees were able to make this investment thanks to the generosity of the Nystagmus Network’s supporters and fundraisers, notably Southampton-born Mike Larcombe who, in 2021, completed his Wiggly Walk 2, a cycle ride around Tasmania, and raised a further £1,000 in sponsorship. Thank you, Mike.