Dilated cardiomyopathy: improving care and seeking a cure

Dilated cardiomyopathy (DCM) is a disease where the heart muscle becomes 'dilated' or bigger. As a result, the heart becomes thin and weak, which can lead to heart failure. It is estimated to affect up to 260,000 (1 in 250) people in the UK. DCM can be treated using common heart medications like ACE inhibitors, but there are currently no treatments available developed specifically for the condition. DCM is also a leading cause for people needing a heart transplant.

Proving the importance of long-term treatment for DCM

Although there is no cure for DCM, heart medicines can help heart function to recover. Some people, especially younger people with DCM, even find that their symptoms disappear completely with treatment. These people often ask whether they can stop taking their medicines – but until recently, it was unclear whether stopping heart failure treatment in this situation was safe. This question was addressed in a study (called TRED-HF), led by BHF Clinical Research Training Fellow Dr Brian Halliday and Professor Sanjay Prasad at the Royal Brompton Hospital and Imperial College London.

In 2019, their results showed for the first time that people with DCM should not stop taking heart failure medications. Dr Halliday said: “We discovered as soon as they came off the treatment they had a reduction in heart function – there was a 50 per cent chance of their heart getting worse very quickly.

For Jane Rowlands, one of the participants in TRED-HF, taking part meant an opportunity to try to safely reduce her medication. “If I hadn’t taken part in the trial I would have probably just tried stopping the tablets myself, and that obviously would have been dangerous. Since taking part, I am on a reduced dose – and the care I received during the trial made me feel supported at what was a difficult time.”

Finding the genes behind DCM

The BHF is continuing to support research aiming to advance our understanding of DCM and how best to treat it. We're investing over £2 million into the largest ever study of DCM, which will recruit 2,000 people with the condition to investigate how genes and lifestyle factors are linked to its development. The GO-DCM study is being led by Professor Stuart Cook at Imperial College London.

Professor Cook said: “For about 1 in 4 patients with DCM we can find a genetic cause, but that leaves us with hundreds of thousands of people with DCM that we cannot explain, which hinders our ability to diagnose and treat the patients or help their families. As we get a better understanding of the genes which cause the condition, we can hope to develop new treatments which target these genes and pathways.”

First published 1st June 2021