The Top Ten Research Priorities for Cardiomyopathy

At the beginning of 2023 we partnered with the James Lind Alliance to complete a ‘priority setting process’ to identify the top 10 priorities for future cardiomyopathy research.

People affected by cardiomyopathy, as well as the health care professionals involved in caring for them, contributed their ideas and hopes for future research topics, to help shape the future direction of research.

After several months of analysis and discussion, the list of the 10 research priorities for cardiomyopathy has now been published:

1. What are the emotional and psychological impacts of living with cardiomyopathy? How are these best treated and managed?
2. How often should family members at risk of developing cardiomyopathy be screened and which are the best tests to use? When is it safe to stop screening?
3. Should treatment for cardiomyopathy be tailored to the individual, e.g. based on their specific gene variant, age or gender?
4. What triggers the start of cardiomyopathy (e.g. age, stress, pregnancy, other health conditions)? How do these triggers work and can they be blocked?
5. Are there treatments which can prevent cardiomyopathy developing in people at risk? Are there treatments to stop it getting worse in people with symptoms?
6. What are the biological mechanisms that change heart muscle cells in cardiomyopathy? Could this understanding lead to new treatments?
7. Why are people with the same genetic variant affected differently? Why do some people with a genetic variant never develop cardiomyopathy? Could this understanding lead to new treatments?
8. Do people with cardiomyopathy experience better outcomes if they are treated at a specialist clinic rather than a general clinic?
9. What does ongoing monitoring and long-term care for people with cardiomyopathy need to include?
10.  What are the best approaches to cardiac rehabilitation for people with cardiomyopathy?