BY TOBY PORTER
Evelina London Children’s Hospital has been awarded funding to help children and young people with a severe muscle-wasting condition take part in research.
The hospital’s neuromuscular service has received funding of £193,487 from the charity Duchenne UK.
The money will fund two new research posts which will form part of the charity’s network of clinical trial sites, the DMD Hub.
This will mean that patients in London and the south-East with Duchenne muscular dystrophy (DMD), an inherited genetic condition that causes the muscles to weaken, will have more opportunities to take part in clinical trials.
The condition primarily affects boys and leads to a complete loss of mobility, respiratory difficulties, heart problems and a much lower life expectancy.
Vasantha Gowda, consultant paediatric neurologist at Evelina London, said: “We are very grateful to Duchenne UK for funding these two posts, and are excited to be joining the DMD Hub.
We have an excellent team at Evelina London and this funding will help us to expand the number of clinical trials we are already running as well as future-proof our clinical trial capacity.”
The grant is being provided through Duchenne UK’s partnership with the charity Chasing Connor’s Cure.
The charity was set up when founder Matt Crawford’s son, Connor, who is treated at Evelina London, was diagnosed with DMD in 2016.
Duchenne UK has invested £1.79 million in the DMD Hub and almost 200 boys in the UK have been recruited to take part in clinical trials since the network started.
The DMD Hub was created to expand capacity at hospital research sites for the condition, and the network is currently funding 22 posts, including doctors, nurses, physiotherapists and support staff all over the UK.
Mr Crawford said: “When Duchenne UK launched the DMD Hub project, we immediately put Evelina London forward as a centre that would benefit from investment into delivering research trials, benefitting Connor and other boys that visit the hospital.
“We are immensely grateful to Duchenne UK and our fundraisers to be in a position to provide Evelina London with the resources to establish themselves as a research centre.”
The £193,487 grant to Evelina London Children’s Hospital will fund a clinical research fellow and a physiotherapist to support the team’s work on clinical trials.
Last April the Evelina London nueruomuscular service was awarded Centre of Clinical Excellence status by Muscular Dystrophy UK for providing outstanding care for children and young people with muscle-wasting conditions.
Evelina London is celebrating its 150th anniversary this year. The hospital was founded in 1869 as Evelina Hospital for Sick Children by Baron Ferdinand de Rothschild, whose wife, Evelina, died along with their baby in childbirth.
To find out how Evelina London will be celebrating its special birthday, visit www.evelinalondon.nhs.uk/150.
To find out more about the DMD Hub and to search for clinical trials, visit dmdhub.org
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