Access to treatments

Duchenne UK grants £130,173 to Royal Manchester Children's Hospital to join the groundbreaking DMD Hub

June 2019

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.






What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information and interview requests:

Visit www.duchenneuk.org

Molly Hunt – Head of Communications, Duchenne UK E: [email protected]

Published on 6 March 2019

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