We're all Joining Jacks fight against Duchenne Musculare Dystrophy, are you?

Arrhythmias Update – October 2020

In 2018, alongside Duchenne UK and and Alex's Wish, we 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: nuth.NECTAR@nhs.net.

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.

 

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