New partnership to improve treatment outcomes for children with arthritis

27 January 2021
A mum with her daughter at home.
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Around 15,000 children under the age of 16 have juvenile idiopathic arthritis (JIA) in the UK. The condition can have a huge impact on a child’s life – affecting their education, friendships and ability to enjoy the things their peers are doing – but with effective treatment and the right support it doesn’t have to be this way.

Biologic therapies (for example, anti-TNF drugs like etanercept) and biosimilar treatments are routinely prescribed to children and young people with JIA and although these have been shown to be safe and effective in clinical trials, not much was known about how well they work when used for a prolonged period of time and if there are any long-term effects from these therapies - a key consideration for parents and young people with JIA.

Therefore, research that looks into improving our understanding of JIA is vital to improving clinical practice and treatments for people with arthritis, which is why we’re delighted to announce a new partnership with the British Society for Rheumatology (BSR) to fund the UK JIA Biologics Register. Find out more about our research.

What is the UK JIA Biologics Register?

Versus Arthritis and the BSR were already carrying out independent studies at hospitals throughout the UK to look at the safety and effectiveness of biologic and biosimilar treatment for JIA.

Now with both these studies combined to create the UK JIA Biologics Register – this will be the world's largest group of children and young people involved in research about JIA.

The University of Manchester, where the previous studies are based, will continue to oversee the running of the register and the principal investigator, Professor Kimme Hyrich, says:

“The long-term effects and safety of biologic drugs for children remains one of the top research priorities for children and their families living with JIA.

“The UK JIA Biologics Register offers a rich resource in which studies of treatment outcomes can be undertaken. This funding extension means that we can continue to add data to this rich national resource for at least 4 more years.”

What are the key findings from the JIA studies so far?

  • Do biologics improve disease activity in JIA?

One study looked at how treatment with Enbrel (etanercept) affected disease activity (that is, how well the symptoms of JIA are controlled) in the first year of treatment.

The researchers found an improvement in the disease of children treated with Enbrel, with 38% of patients achieving an excellent response, and 48% achieving minimal disease activity after only 1 year.

  • Does the response differ if biologics are tried first or after another drug?

When a child fails to respond to their first biologic therapy, usually an anti-TNF therapy, it’s not yet known whether it’s better to try a second anti-TNF (as per the current national guidelines) or switch to a different type of biologic.

This analysis showed that the type of biologic used as a second biologic made no difference to response rates after one year.

  • What are the key determinants when choosing a biologic therapy for JIA?

With the increasing choices of biologics for children with JIA, the researchers have seen that the presence of uveitis, an inflammation in the eye associated with JIA, and systemic JIA, are the key determinants in choice of first biologic in JIA.

This knowledge could help inform future clinical practice, guidelines and research.

How are these studies helping families with JIA?

David Parker, a parent of one of the children involved in the UK JIA Biologics Register work, shares why the research generated from the register data is so important.

“The biological treatment offered to people with arthritis is a massively positive influence regarding quality of life especially for young children. Biologics allow young people to attempt and to be encouraged to attempt, activities regarded as being normal by their peers unlike the experience of previous generations thus reducing the social isolation issues encountered by many.

“For parents and carers who remain awake into the early hours the only respite is that sparkle of hope and comfort that is provided by the UK JIA Biologics Register which delivers continued surveillance and oversight so critical in maintaining the degree of assurance demanded by parents / carers.

“A parent does not know a child’s future but if all that can be done is being done to ensure their lifelong safety then such a positive outlook makes an easier journey for all concerned.

“For any family of a child with a JIA condition the true end point of any research is a significant positive outcome for their child. The UK JIA Biologics Register offers an opportunity to advance clinical knowledge and real world practice so important for current patients’ outcomes but more importantly for the as yet undiagnosed children and their carers who without hope that research brings feel their future would look very bleak indeed”

A look to the future…

This new partnership will allow us to continue answering vital questions about the treatment of JIA for children and families across the world.

Ali Rivett, Chief Executive Officer at BSR says:

“I'm delighted that we're partnering with Versus Arthritis to secure the long-term future of these important studies and look forward to seeing the research that's generated in the coming years by the register to inform the care of this patient group across paediatric and adolescent rheumatology.”

While our director or research, Dr Stephen Simpson adds: “This collaboration is vital to measuring the long-term outputs of treatments for JIA, and will open the door to more targeted, effective treatments for more children with arthritis.”

Calling all 11 to 16-year-olds - we need your help

We are launching an exciting project to improve the information and support we offer to young people. If you’re aged between 11 and 16 and have arthritis or a similar condition, we’d love to hear from you.

Get in touch>>

We’re here whenever you need us.

If you or a family member under the age of 25 has arthritis, our Young People and Families services is here to support.

Our service offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.

  • If you would like to talk to someone, you can call our free helpline on 0800 5200 520 (Monday to Friday, 9am to 8pm)
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