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National Childhood Arthritis Research Centre Launches In Liverpool

Lily Whitehead with dad NickA new national research centre dedicated to testing better and more effective drug treatments for children with arthritis has been unveiled in Liverpool.

The Arthritis Research UK National Experimental Arthritis Treatment Centre for Children based at Alder Hey Children’s NHS Foundation Trust and the University of Liverpool aims to improve the health and wellbeing of children with arthritis and related rheumatic conditions.

Working with the UK’s Paediatric Rheumatology Clinical Studies Group, the centre has identified four priority disease areas: JIA, childhood lupus, JIA–associated uveitis (a potentially serious eye condition that can lead to blindness if untreated) and childhood bone diseases.

Juvenile idiopathic arthritis (JIA) is a type of inflammatory arthritis, which affects around 12,000 children and teenagers under the age of 17 in the UK, causing severe joint pain and stiffness, and in some cases affecting the internal organs. Although modern medicines such as biological therapies usually developed initially for adult inflammatory arthritis can also be effective in children, only a handful have been licensed and approved for children and young people.

Five year old Lily Whitehead began a new drug trial for her juvenile idiopathic arthritis (JIA) in August 2013 and her family can’t believe the improvement. When her knee’s first swelled up, Lily, then three years old, was unable to walk long distances and struggled to interact with other children. She also developed uveitis. Initial treatment of the uveitis proved unsuccessful, so the draw of a clinical trial that would help both her eyes and her joints was obvious.

Lily’s mum Jane explains: “Although it was a risk, it was one we knew we had to take. If it meant Lily had the chance of a better quality of life it was essential we tried anything we could for our daughter and for other children with arthritis too. The research team are brilliant, and coming to Alder Hey is part of Lily’s routine now. The injections don’t bother her so she actually looks forward to coming in to see all the nurses.

“It was a big decision to put Lily on these new drugs, but I trusted the doctors at Alder Hey and it’s really paid off. Not only has her condition improved but her confidence is so much better now too. It’s remarkable how far she’s come since last August, we’re excited that this could be a permanent improvement and we’re delighted we took part in the trial.”

The centre has internationally recognised expertise including in clinical pharmacology, drug safety science, personalised medicine, biostatistics and trials methodology and translational biosciences to support the development of better, safer medicines for children with arthritis and bone disease. It has very strong collaborative links with its partner centres in Bristol, who will lead on studies of uveitis and Sheffield, who lead the bone health theme.

The new centre will work closely with the pharmaceutical industry and a national network of world-leading research institutions to speed up the development of new treatments for children with arthritis, by running small clinical trials of promising drugs currently in the pipeline that would otherwise take years to come onto the market. It will also collaborate closely with experts in adult arthritis in Liverpool, Newcastle, Glasgow and Oxford, as well as with the NIHR Moorfields Biomedical Research Centre.

Director of the new centre Professor Michael Beresford said: “Children and young people with arthritis and related conditions have been slow to benefit fully from the rapid advances in new treatments that have appeared over the past 10 years. We have the internationally competitive expertise within the new centre to ensure that in future children will be among the first to receive new medicines that are safe and effective and will improve their health, wellbeing and quality of life throughout their lives. We also want to use our understanding of disease and work on what is causing disease and the mechanisms behind it to identify new drug targets, and to look at drug safety.”

Professor Alan Silman, medical director of Arthritis Research UK said: “We recognise the importance of making sure that children with arthritis benefit from the enormous improvements in treatment that have emerged in the past decade since our discovery of anti-TNF therapy for adults with inflammatory arthritis. It’s for this reason that we have established the first centre in the UK devoted to the study of the effects of new drugs for childhood arthritis. We are excited that the work of Professor Beresford and his colleagues nationally will make a considerable impact on changing the face of treatment for children with this longstanding disabling disorder.”

Professor Ian Greer, Provost and Pro-Vice-Chancellor of the University of Liverpool stated: “Arthritis is often seen as a disease affecting adults, but 12,000 children in the UK also suffer from a form of this distressing condition. The University of Liverpool already has significant expertise in developing treatments for children and the new Centre will allow us to begin to address the challenges faced by young people with JIA and their families.”

The new national centre has been awarded funding of over £1.25 million over five years from a number of sources. Arthritis Research UK is initially investing £225,000 over three years with the expectation of two further years of funding following interim review. The other funders are also making a five-year investment:  Alder Hey Children’s Charity £375,000; Alder Hey Research Business Unit £245,000; the University of Liverpool’s Institute of Translational Medicine £276,000; NIHR Alder Hey Clinical Research Facility £50,000; Sheffield University £50,000 and Sheffield Children’s NHS FT £50,000.

Clare White, Director of Alder Hey Children’s Charity said: “We are delighted to contribute to what will be a fantastic facility for children and young people with arthritis and related disorders.  Alder Hey is already playing a huge role in treating children with these conditions and this national treatment centre will play a key role in the future treatment of this disease.”

Your comments

  • your hospital is really good

  • another triumph for alder hey rheumatology….from small acorns…!!!

  • Huge congrats on all your hard work on making this important centre a reality

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