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Clinical trials help scientists to find new treatments, modify use of existing treatments, help prevent diseases and improve care. By volunteering to take part in research, Lily is playing a crucial part in testing how we manage treatment of a condition called uveitis, the third leading cause of blindness in the developed world.
Uveitis is inflammation inside the eye. The inflammation is caused by the immune system becoming overactive within the eye and can affect the front, middle, or back part of the eye. Inflammation in the front of the eye is called anterior uveitis. Some people with chronic anterior uveitis (CAU) also have Juvenile Idiopathic Arthritis (JIA), a childhood disease that causes inflammation of the joints. When this happens, the uveitis is referred to as JIA-associated uveitis. There are also children with CAU that looks identical to chronic JIA-associated uveitis, but without the history of arthritis. CAU presents similarly in the eye and can result in similar visual complications as JIA-associated uveitis.
Lily was part of an international research trial led by the University of California that has recruited patients with uveitis from Australia, the UK and USA. The clinical trial is called Adalimumab in JIA-associated Uveitis Stopping Trial (ADJUST). Adalimumab is a standard treatment for both uveitis (including CAU) and JIA. The purpose of the trial is to compare the effects (good or bad) of stopping adalimumab or continuing adalimumab treatment. Patients are randomised to continue treatment or receive an inactive substance (placebo).
Lily and her mother Jane have very kindly given us their thoughts on being part of a research trial at Alder Hey, where the research trial delivery was supported by the NIHR Alder Hey Clinical Research Facility.
Both Lily and Jane were happy to be approached about joining the ADUST trial, and Lily wanted to join “as she was aware that not only would it help her own health, it would benefit others too”.
With regards to Lily and her family’s experience of taking part in research at Alder Hey, “Lily has taken part in two research trials over the last ten years for her condition of juvenile arthritis. Both have been really successful trials”, and it was “definitely the right decision for us being both helpful to Lily and to the important research which will help other children in the future”.
Lily added that she “would tell other children to take part in research trials and not to be scared as you are really well looked after, and the research team who work there are amazing!”
Lily’s mother Jane had this message for other parents/carers who are considering whether their children should join a research trial at Alder Hey: “Trust the fabulous research teams involved. We have always been really well looked after by this hard working, helpful and kind team and Lily is always happy to return because of this.”
Karen Phelan, NIHR Alder Hey Clinical Research Facility Lead Research Nurse knows Lily well and said “Lily is an amazing young lady who has been part of research for many years. With her taking part in clinical trials she has helped improve the lives and condition of many young people with her condition. Treatment for chronic conditions are important for young people, but it is also important to look at other ways to treat conditions, and through research we can achieve this. This means we can improve treatments and help other children and young people to live a normal life just like their peers and reduce the worry of long-term effects. Clinical trials offer hope to many people and help us find better treatments for others in the future.”
Alder Hey Children's Charity