UK-wide consortium to transform treatment for children and young people with arthritis and uveitis

GOSH patient James
Researchers from the UCL Great Ormond Street Institute of Child Health (ICH) and Great Ormond Street Hospital (GOSH) will lead a UK-wide effort to drive the development of new, targeted treatments for children and young people with juvenile idiopathic arthritis (JIA) and its associated eye-inflammation condition, uveitis.

The CLUSTER consortium has been awarded £5 million from the UK’s Medical Research Council (MRC) with partnership funding from Arthritis Research UK. It brings together world-leading clinical, academic, scientific, statistical and industry expertise in childhood arthritis and its associated eye inflammation uveitis, in partnership with children, young people and their families. Its aim is to improve the lives of children living with these life-changing, complex conditions. Starting in July 2018, CLUSTER will help clinicians to target specific treatments for patients. 

JIA affects around one in 1000 children and young people and can cause long-term disability, significantly impacting on those affected well into adult life. Up to 15 per cent of children with JIA have uveitis which may cause visual impairment; children and young people can become certified legally blind. This five year project will systematically analyse data that is captured from national studies and trials of patients with JIA and JIA-uveitis. It will look for gene alterations, immune cell differences, blood proteins and clinical features that are typical of patients who respond to therapies well, and in patients who develop uveitis. Ultimately, the researchers hope to identify a panel of tests that doctors can use to help make sure treatments are targeted specifically to groups of patients with similar characteristics. The work will also help influence, design and monitor future clinical trials allowing researchers to better understand the condition and test advanced treatments for these debilitating conditions.

Professor Lucy Wedderburn, Professor and Consultant of Paediatric Rheumatology at ICH and GOSH and CLUSTER project lead, said: “We are absolutely delighted to have been awarded this prestigious funding. The consortium builds on our collaborative work carried out in previous studies, brings in new partners from academia, industry, and patients, and will take our understanding of these conditions to a new level. It will ultimately help us to control inflammation earlier, reduce disability and lead to long term benefits for children and young people, and the adults they become.” 

Consortium co-lead Professor Wendy Thomson, Professor of Genetic Epidemiology at the University of Manchester added, “We’re proud to be part of this exciting collaboration which promises to make a real difference to the way we care for children and young people with these debilitating conditions.” 

James’ story 

James, age 14, who has juvenile idiopathic arthritis (JIA) shares his experience: 

“JIA means that in the morning I feel stiffness and it hurts more - like a pressing on my joints. When it’s at its worst it hurts when I’m writing essays at school and pressing down on the paper.” 

His mum Diane adds: “When James was younger he played a lot of sports but he was complaining of soreness in his feet when playing tennis and he said it felt like his shoes were rubbing. Eventually he had to give up rugby as he was having trouble holding the ball as his joints were so painful. When he was diagnosed James began taking a high dose of the methotrexate. After a while his joints started to improve and then he became mostly pain free. He had less stiffness and his toes were better. His condition stabilized for a year and James came off methotrexate treatment. However after a year his condition flared again and doctors advised that he start taking another drug called adalimumab in addition to methotrexate”. 

James adds: “I like adalimumab a lot more as it doesn’t make me feel sick and it’s a lot less painful. With methotrexate it makes me feel nauseous and sometimes I throw up after having it. With Adalimumab I only need to take it every fortnight which is less often than methotrexate which is once a week”. 

Over the years James has taken part in lots of research studies which help researchers like Professor Wedderburn understand JIA and why it affects children differently. 

“It’s brilliant that lots of research is going on into which drugs are best for different children with JIA”, says Diane. “It will help identify how long children need to take these drugs for, what dose they need to take and it might even help identify new treatments”. 

James’ life now is very different. “I can now play sports quite easily,” he says. “My favourites are tennis, football, gymnastics and rugby. I feel more positive about the treatment now and think it is working much better”. 

The research will build on the previous MRC supported-CHART study, which brought together data on 5000 patients with JIA and key collaborative partners from across the UK and beyond. The CLUSTER consortium is supported through the MRC’s stratified medicine programme and will be co-funded through a partnership between MRC and Arthritis Research UK. As an integral part of the Consortium’s work, CLUSTER will also receive co-funding from GOSH Children’s Charity and Olivia’s Vision

The ten CLUSTER co-investigators [Professor Lucy Wedderburn (UCL and GOSH), Professor Wendy Thomson (University of Manchester), Professor Andrew Dick (UCL), Prof. Kimme Hyrich (University of Manchester), Dr Nophar Geifman (University of Manchester), Professor Souyma Raychaudhuri (University of Manchester), Professor Michael Beresford (University of Liverpool and Alder Hey Children’s NHS Foundation Trust), Professor. A.V. Ramanan (University Hospitals Bristol NHS Foundation Trust), Dr Chris Wallace (University of Cambridge) and Dr Michael Barnes (Queen Mary’s University of London)] have made renowned research contributions in the fields of stratified medicine for childhood arthritis and uveitis.

Find out more about pioneering research at GOSH.