Bristol parent talks of positive impact of clinical trial at Bristol Eye Hospital
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 6 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."
