Fight for Sight and Nystagmus Network add to important nystagmus research portfolio

18 June 21

written by:

Anna Riley

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Fight for Sight, in partnership with Nystagmus Network, are pleased to have added two research awards as part of their ongoing portfolio aiming to improve the lives of people affected by nystagmus through improved treatments and diagnosis.

Dr Frank Proudlock, University of Leicester, is studying the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition.

Infantile nystagmus is an eye disease that causes involuntary movements of the eyes. One of the most common causes of infantile nystagmus is albinism which is caused by having reduced or absent pigmentation. People with nystagmus often experience glare, but until now this has not been researched thoroughly.

The team at University of Leicester will study four groups of people: people with albinism; people with idiopathic infantile nystagmus; people with achromatopsia; and, people without nystagmus. They aim to determine the most effective way to measure glare in these groups, how glare impacts reading and if tinted glasses or reading overlays can help reduce glare and improve reading for those with nystagmus.

It’s hoped that a better understanding of the impact of glare on people with the condition will help parents, teachers, doctors and people with nystagmus to come up with the best solutions for reading in their education, work and day-to-day life.

In addition, Mervyn Thomas, also University of Leicester, is studying ways the specialist eye assessments needed to help diagnose and manage the condition, can be made accessible to patients outside of specialist centres. This is particularly important for patients who unable to easily access hospitals such as those living in care homes or people restricted to their home.

Vivien Jones, chairman of the Nystagmus Network’s Research Committee, said: “The Nystagmus Network is delighted that its joint funding relationship with Fight for Sight has led to two awards – first to Frank Proudlock, of Leicester, for his winning bid for a PhD student post. The PhD student who takes up the post will explore strategies to alleviate glare in infantile nystagmus. We greatly look forward to seeing important research flow from this appointment, which will start later this year and represents the biggest-ever single investment by the Nystagmus Network in research. We are also very pleased to see that Mervyn Thomas, also of the University of Leicester, has won the small grant award for his proposal to develop a low-cost system for the recording and analysis of eye movement characteristics, suitable for clinic-based assessments.”

Ikram Dahman, Fight for Sight CEO said: “We’re pleased to continue our important partnership with the Nystagmus Network, funding these vital projects. With one person in every 1,500 people having nystagmus, it’s vital that we fund research that can help improve lives and make sure children and adults with nystagmus live their lives to the fullest.''

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