We have 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 consultation and analysis, 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?
The process of determining the 10 priority research questions is a democratic process. The views of people with lived experience are given equal value to those of healthcare professionals.
The timeline in the image above shows the process. It involved consulting with the cardiomyopathy community through 2 surveys and a final discussion workshop. In the first survey, over 2000 questions were submitted. Through the process, these questions were narrowed down to 26 which went to the workshop. The final 10 questions were discussed and decided in the workshop.
Follow the link below to learn more about the priority setting process:
Now we have the research priorities for cardiomyopathy, the next step is to promote these and influence researchers to undertake the research. It's our job to ensure that the future research priorities project results in more research into the topics that really matter to the cardiomyopathy community.
Cardiomyopathy UK works in partnership with researchers and clinicians on medical research projects. If you are a researcher and interested in knowing more about these 10 priority questions, or about how we can partner with you, please get in touch research@cardiomyopathy.org
We would like to thank all of the project steering committee members for their hard work on this project, all the stakeholders who attended our priority setting day as well as everyone who took part in the surveys. The direct costs relating to this project were funded by the charity with indirect costs part funded by Bristol Myers Squibb.