The DMD Hub Clinical Trial Coordinator Network
10th August 2020
This week, the DMD Hub is sharing updates about a new group within the DMD Hub, known as the DMD Hub Clinical Trial Coordinator Network.
This network forms a crucial part of Duchenne UK's mission, through the DMD Hub, to give everyone diagnosed with DMD the opportunity to access research in the UK.
Duchenne UK has now invested £2.7million into the DMD Hub - the UK’s first network for clinical trials for DMD. As a result of our investment, there are now 32 doctors, physiotherapists and clinical trial coordinators helping to bring more companies running DMD trials to the UK, bringing income to the NHS and helping to recruit more than 250 boys to take part in DMD trials, who otherwise, would not have the opportunity.
The DMD Hub Clinical Trial Coordinator (CTC) Network was set up in January 2020 by clinical trial coordinators at the 11 DMD Hub sites. The aim of the network is to provide a forum for clinical trial coordinators across the UK to support each other and share their experiences of running clinical trials.
We are pleased to share with you 3 profiles about the network on the DMD Hub website, please follow the links below to find out more:
- The DMD Hub Clinical Trial Coordinator Network and an interview with Anna Irvin – Clinical Trial Coordinator at the John Walton Muscular Dystrophy Research Centre and current DMD Hub Clinical Trial Coordinator Network Lead.
- Tracy Langan, from the Royal Hospital for Children Glasgow talks about her experiences as a DMD Hub Clinical Trial Coordinator
- Mashal Asif, the DMD Hub Clinical Trial Coordinators at Bristol Royal Hospital for Children discusses her role and the CTC Network
NOTES FOR EDITORS
What is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy (DMD) 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 has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.
Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.
We need your help, because we need to keep funding promising new research.
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 visit www.duchenneuk.org
Published on 10 August 2020Share this article Categories Access to treatments