Cardiomyopathy UK Reveals Top Ten Research Priorities for Advancing Cardiovascular Health

Cardiomyopathy UK, in collaboration with the James Lind Alliance, has undertaken a groundbreaking initiative over the past year – the Cardiomyopathy Future Research Priorities Project. This ‘Priority Setting Partnership’ (JLA PSP) brings together patients, their families, caregivers, and healthcare professionals to collectively determine the future trajectory of cardiomyopathy research. The culmination of this collaborative effort has resulted in the identification of the top ten research priorities for cardiomyopathy.

The Top Ten Research Priorities:

1. Emotional and Psychological Impacts:
What are the emotional and psychological impacts of living with cardiomyopathy? How are these best treated and managed?

2. Screening for Family Members:
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. Tailored Treatment Approaches:
Should treatment for cardiomyopathy be tailored to the individual, e.g. based on their specific gene variant, age or gender?

4. Triggers of Cardiomyopathy:
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. Preventive and Therapeutic Treatments:
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. Biological Mechanisms of Heart Muscle Cell Changes:
What are the biological mechanisms that change heart muscle cells in cardiomyopathy? Could this understanding lead to new treatments?

7. Variability in Genetic Impact:
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. Specialist Clinics vs. General Clinics:
Do people with cardiomyopathy experience better outcomes if they are treated at a specialist clinic rather than a general clinic?

9. Ongoing Monitoring and Long-Term Care:
What does ongoing monitoring and long-term care for people with cardiomyopathy need to include?

10. Cardiac Rehabilitation Approaches:
What are the best approaches to cardiac rehabilitation for people with cardiomyopathy?

Methodology and Patient Involvement:
The prioritisation of these research questions followed a meticulous methodology, engaging over 1,000 individuals who submitted more than 2,000 questions in the initial survey. The subsequent surveys involved over 600 participants, leading to the final workshop where the top 26 questions were narrowed down to the final top ten. The detailed results of the Cardiomyopathy PSP will be published, providing insights for the research community.

Collaboration and Future Endeavours:
Cardiomyopathy UK emphasises collaboration with researchers and clinicians on research projects, inviting interested parties to explore partnership opportunities by contacting The organisation aims to influence the cardiomyopathy research agenda and align its own research initiatives accordingly.

The unveiling of the top ten research priorities marks a significant step forward in shaping the future of cardiomyopathy research. With a focus on collaboration, patient involvement, and a commitment to influencing the research agenda, Cardiomyopathy UK sets the stage for impactful advancements in understanding, treating, and managing cardiomyopathy.

For more information visit: Future Research Priorities | Cardiomyopathy UK