This will significantly expand trial capacity for Duchenne Muscular Dystrophy in the UK, particularly in the north west of England.
The charity's co-founder Alex Johnson -- recently awarded the Pride of Manchester -- said it was a huge boost to research in the region.
Duchenne UK is delighted to announce a significant expansion of its groundbreaking DMD Hub project -- bringing on board the Royal Manchester Children’s Hospital and opening up the potential for people with Duchenne Muscular Dystrophy (DMD) in the North West of England to have access to the most exciting areas of research into the condition.
Duchenne UK has invested a total of more than £1.5 million so far into the DMD Hub, and has received overwhelming feedback from industry that the DMD Hub is hugely beneficial in accelerating recruitment into clinical trials.
The DMD Hub links hospitals across the UK, providing funding for posts and supporting researchers to ensure that patients can get the fastest access possible to potential new treatments. It was created by the charity Duchenne UK in 2014 in Newcastle and is now helping clinical trial sites all over the UK, bringing trials to hundreds more children with this rare disease.
The project is expanding into Manchester with an initial grant of £130,173. This will fund a DMD Hub Clinical Fellow post for three years at the Royal Manchester Children's Hospital, which will oversee the selection and recruitment of patients, monitor safety and organise study visits and procedures. The DMD Hub will provide mentoring and training and give them access to key resources and best practice through the DMD Hub Toolkit. The position is co-funded by the charity Duchenne Now.
Duchenne UK has invested more than £11 million so far into research into DMD,
Imelda Hughes, Consultant Paediatric Neurologist and Lead Clinician for the Neuromuscular Service at Royal Manchester children’s Hospital, said:
“This grant from Duchenne UK will allow us to join the DMD Hub which is at the forefront of providing the best possible care for patients. The Hub is such an amazing project. We are thrilled to be able to have its support and help. This money gives us the opportunity to really change the lives of young people with DMD in the North West and their families."
Tony Levene, Duchenne Now co-founder said:
“We are delighted, as always, to partner with DUK on this important project. When my son was diagnosed there were no trials available for us anywhere near where we live. I am delighted that children born with DMD in the north west of England will no longer have to travel to places like London to have access to the most advanced medicines and procedures."
To find out more about the DMD Hub and to search for clinical trials visit DMDHUB.ORG
We would like to thank our partner charity Duchenne Now for granting £43,000 towards this post. We would also like to thank family fund Team Felix who have put £20,000 towards this post.