21 October 2020

In 2018, Duchenne UK funded an £86,460 project to look at ways in which we can better detect heart failure in older patients with DMD.

One way to do this is to find ways of identifying arrhythmias – fast or slow irregular heartbeats that can lead to life threatening cardiac failure.

Underlying heart problems are often the reason why people with DMD die very young, or suddenly. These problems can be difficult to detect early because the underlying problems are 'asymptomatic' - i.e. we don't know they are there until it's too late.

This month, we received an update from Dr John Bourke and his team at Nectar(Newcastle Cardiovascular Trials and Research) who are running the study, about recruitment for it.

Dr Bourke and his team are looking to see if using implantable devices, such as defibrillators or pacemakers, could prevent future cardiac arrests, by detecting ‘background arrhythmias’. 

Treatment with these devices is known to help non-DMD patients with similar degrees of heart pumping weakness to live longer. However, implantable defibrillators are not usually considered for patients with DMD. 

This project has been disrupted by the COVID-19 pandemic, with recruitment being placed on hold after only four patients had been enrolled. One of the members of the project team also had to be redeployed to assist with the NHS’ COVID-19 response.

Now the restrictions have eased, they are in the process of completing recruitment for another two patients, and are working to identify more patients to take part in the study.

If you would like to find out more about this study, or similar ones being run by Nectar, please contact: [email protected].

We are very grateful to Dr Bourke and his team for all their hard work in getting this important project back up and running, and for helping the DMD community.

We would like to thank our partner charities Alex’s Wish and Joining Jack for supporting this project.

 


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