A group of people wearing white coats sit in rows behind laptops with a lecturer pointing at a screen.

Eye health experts seek to refresh eye research priorities

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.

Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.

Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy  earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh. 

Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:

“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.

We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.”  

The survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in. The survey feedback will inform the final Top 10 updated priorities across different eye subspecialties. 

Please click here to take part in the survey. 

The survey will close on 9 August 2022. 

Take part in the survey here

Volunteers needed

It’s thought that some types of nystagmus are caused by a genetic spelling mistake. Although nystagmus is not classified officially as a rare disease, we can all take part in genetic research to help researchers find out more.

The NIHR BioResource – Rare Diseases has been established to identify genetic causes of rare diseases, improve rates of diagnosis and to enable studies to develop and validate treatments; thus improving care for those with rare diseases and their families.

There are approximately 7,000 inherited rare diseases and the genetic basis of about half of these have been discovered, the challenge now is to identify the remaining causes of rare diseases.

  • 1 in 17 people will develop a rare disease at some point in their lives
  • 30 million people across Europe have a rare disease
  • 75% of rare diseases affect children, and 30% of rare disease patients die before their fifth birthday
  • A rare disease affects the individual, parents, siblings and friends; many people’s lives are affected by rare disease

The NIHR BioResource – Rare Diseases recruits affected participants and their relatives across several different disease areas including Infection and Immunity, Neuroscience, Rare Diseases (including Rare Cancers) and Cardiovascular Disease.

The whole genomes of a large number of participants have been studied and an extensive range of phenotype information has been captured.

Watch the short film below featuring Professor Willem Ouwehand and Dr Ernest Turro, both researchers at the NIHR BioResource for Rare Diseases as they talk about the importance of volunteers to help them understand more about the genetic causes of rare disease.

Read more about the research project here

Watch the video here