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Thursday 20th June 2019

New national register for children with arthritis

22nd June 2011
A new national register has been set up to monitor the long-term safety and effectiveness of biologic drugs used in children with arthritis.
Arthritis Research UK is spending more than £700,000 on establishing and maintaining the juvenile idiopathic arthritis (JIA) biologics register over the next five years at its epidemiology unit at the University of Manchester.
The charity is also establishing a new biobank of blood and/or saliva samples from children which will be used to test whether there are variations in genes which can predict who will respond to the drugs, and who may get serious side-effects.
Currently 700 children with arthritis in the UK who are taking etanercept, the only biologic therapy currently licensed to treat the condition, are on a register funded by the manufacturer of the drug.
The new register will include up to 250 youngsters who are on one of the other seven existing biologic drugs. Although the drugs are only currently available off-licence, there is increasing evidence that these alternatives are also effective.
Biologic drugs are a new class of drugs which have transformed the treatment of inflammatory arthritis in adults and children. The first drugs in the class, known as anti-TNF therapy, were developed by Arthritis Research UK for the treatment of rheumatoid arthritis about 10 years ago, but have also been found to have been just effective in treating even very young children.
“Until the emergence of biologic drugs, treatment options for severe JIA were limited to methotrexate and steroids, although many children failed to respond adequately or developed side-effects,” explained Dr Kimme Hyrich, senior lecturer in rheumatic disease epidemiology at the University of Manchester, who is in charge of the register.
“Although the new biologic drugs have revolutionised the treatment of JIA they are not a cure, and children need long-term treatment. Parents and children ask about side-effects and whether or not the treatment will work for them. The answers to such questions are currently lacking, and the long-term risks are unknown. We expect the register and the biobank to answer those questions.”
Dr Hyrich added there was increasing evidence that there were occasions when an alternative to etanercept as a first line biologic should be considered, and newer biologic drugs were on the way. “Hence the need for a national demographic picture of biologic use in children is crucial,” she said.
Children being started on biologics will have their details entered on the register. A control group of children starting the conventional therapy of methorexate will also be followed, to compare the outcome. To date 18 hospitals are involved in the study and within the first year 50 children receiving a biologic and 50 controls have been added to the register.

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