Advocacy Groups Team Up to Fund World’s Largest JIA Register

Advocacy Groups Team Up to Fund World’s Largest JIA Register
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Versus Arthritis and the British Society for Rheumatology have partnered to share data — and to fund the UK JIA Register, which will track the long-term safety and efficacy of biologic therapies used to treat juvenile idiopathic arthritis (JIA).

The new initiative combines studies conducted by each organization to create the world’s largest register of children and young people involved in JIA research.

“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,” Kimme Hyrich, MD, PhD, a rheumatologist at the University of Manchester, where the register is overseen, said in a press release.

“This funding extension means that we can continue to add data to this rich national resource for at least 4 more years,” she said.

Biologics are medicinal products whose components have been isolated from living organisms, whether occurring naturally in the body or made in the laboratory. Examples of such therapies for the treatment of JIA include Enbrel (etanercept) and Orencia (abatecept), as well as Ilaris (canakinumab), and Actemra (tocilizumab).

Taken together, biological therapies are disease-modifying anti-rheumatic drugs given to patients who are intolerant to synthetic medications, such as methotrexate, or who do not respond to them.

Despite having been proven safe and effective in clinical trials, much remains unknown regarding the long-term effects of biologics and biosimilars.

Biosimilars have similar properties to their reference biological treatments, as well as like safety and efficacy, but are generally less expensive. They were developed with the goal of lowering healthcare costs and providing access to more treatments.

“The UK JIA Biologics Register offers a rich resource in which studies of treatment outcomes can be undertaken,” Hyrich said.

Key findings from JIA studies within the register have shed light on the effects of treatment on disease activity and on the relative benefits of changing a biologic therapy. They also have helped scientists determine which clinical findings should be considered in the choice of a biologic therapy.

For example, one study found that one year of Enbrel use resulted in 38% of patients achieving excellent responses, and 48% achieving minimal disease activity.

An analysis of the relative benefits of switching to a second biologic therapy after a child fails to respond to the first — as recommended per national guidelines in the U.K. — found that changing to a different type of biologic leads to similar outcomes. The results showed that the new therapy usually works in a similar way as the one from which the patient switched.

A third study identified uveitis — an inflammation in the eye associated with JIA — and systemic JIA as deciding factors when choosing a first biologic treatment. Findings like this could inform future treatment guidelines, clinical practice, and research, the scientists note.

“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,” said David Parker, the parent of a child involved in the register.

“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,” he added.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José holds a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.

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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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