As the international research community celebrates International Clinical Trials Day on 20 May, a Bristol parent has expressed her delight and relief after making the tough decision to allow her daughter to participate in a drug trial at Bristol Eye Hospital.
Samantha Hill talked about experience and emotions during the clinical trial process and the appreciation she has, having seen the beneficial and life-changing effect it's had for her daughter and family.
When Samantha's daughter, Freya, was diagnosed with juvenile idiopathic arthritis (JIA) at the age of two, doctors told Samantha about the possible associated effects the disease could have on Freya while growing up. Two years after Freya's diagnosis, it became apparent she was suffering from a symptom of her condition called uveitis, which causes inflammation to the eyes and can be catastrophic to sight. Freya had already attended clinics at Bristol Royal Hospital for Children to monitor her arthritis, but began visiting Bristol Eye Hospital when her vision became affected. After three visits to the Eye Hospital, it was evident Freya's sight was deteriorating and required further intervention.
Professor Athimalaipet Ramanan, consultant paediatric rheumatologist at Bristol Royal Hospital for Children, said: "Freya's uveitis was not controlled on standard medications, so with Freya's parents' input she was enrolled into a trial of a novel drug, called the Sycamore trial. The trial is looking at effectiveness of a new treatment in addition to standard treatment. The treatment period was for 18 months, with follow up for a further six months after completion of treatment. Clinical trials of new drugs are very important in helping advance the management of rare diseases in children.
Samantha said: "At the first mention of a clinical trial, I felt there was no way I would let them try out new drugs on my child. It's amazing how quickly you change your mind when your child's sight is threatened and you suddenly realise those new drugs offer some hope. Suddenly it became imperative that she was involved in the trial to give her a chance of accessing them."
The trial, led by Bristol and run across 14 sites in the UK, is funded by £1.5 million grant from the National Institute of Health Research (NIHR) and Arthritis Research UK. It is one of the many research projects running at University Hospitals Bristol that clinicians offer to patients, giving new treatment and management options and generating evidence to improve the care the NHS provides.
Diana Benton, head of research and innovation at University Hospitals Bristol, said: "We are delighted that taking part in research has been such a positive experience for Freya and her family, and would like to thank them for the time and commitment they have given to this trial. We know that visiting hospital for tests and treatment can be very stressful, and the decision by any patient to take part in research is a generous act which will benefit patients in the future by shaping the care we provide in the NHS."
Samantha said: "We feel so fortunate that we were able to give Freya this chance, the results have been incredible. Freya also knows what an important part she has played in the future of other children with arthritis and uveitis and how being involved in a trial will open up treatment options for others."
"We were so well looked after on the trial. Our trial nurse was always there to answer questions and support me and Freya with learning to do the injections at home and we felt really safe."
Freya said: "I don't like having the injections but I suppose as it's keeping my eyes safe, it's worth it."