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Understanding research priorities in childhood uveitis

A team at UCL Great Ormond Street Hospital, led by Dr Lola Solebo, has been working with families to understand the research priorities that matter most in childhood uveitis. Uveitis is inflammation inside the eye, and around 20% of children with JIA can develop the condition. It can be detected by regular eye checks, so it is important to attend eye appointments even if your child does not have any visible symptoms.

Dr Solebo has shared a summary of the research for us below. This was written by Nimesha Mediwaka, Sonali Dave, and Ameenat Lola Solebo. The team asked us to thank all the families that took part in their study.

You can find out more about uveitis at www.jarproject.org/hope/uveitis

What is childhood uveitis?

Childhood uveitis is a rare eye condition that causes inflammation inside the eye. If not treated early, it can lead to serious vision problems or even blindness. It sometimes comes without symptoms, so it can be hard to spot in children.

What was the goal of this study?

We wanted to find out which areas of research patients and their parents think are most important.

What did we do?

We asked patients and parents to:

Rate seven categories of uveitis research (like diagnosis, treatment, and patient experience).
Share their own research questions and areas of concerns in a survey.

What did we find?

We had responses from 97 families affected by childhood uveitis
The most highly rated research category was "Outcomes" — people want to know which treatments work best.
Parents of patients rated outcomes research more highly than patients did.
All categories (like diagnosis, prediction, and patient experience) received strong support — meaning families want research across all areas.
People shared over 200 specific questions they want answered – and we arranged those into similar themes to help other researchers focus their work

What kinds of questions did patients and families ask?

“Why does uveitis happen?”
“Can we find a cure, not just manage it?”
“How can we support children and parents emotionally?”
“Are there better ways to test kids without scary machines?”
“Can we use genetics or AI to find the best treatment for each child?”

What does this mean?

There’s strong interest in research from the people directly affected.
Research should focus on the real-life concerns of families — including better treatments, less invasive testing, and more support.
No one category should be ignored — every aspect of the disease matters to patients
We can advise research teams to design studies which are able to answer multiple types of questions so they can maximise the benefits from their work for families

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