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, can contribute their ideas and hopes for future research topics, to help shape the future direction of research.
Have your say
Please complete our survey about what researchers should be investigating. Whether you want more research into treatments, or about genetic causes of cardiomyopathy, or impacts on wellbeing or lifestyle – or something else altogether – we want to hear from you.
The survey only takes about 10 minutes to complete and is an important first step towards establishing the top 10 future research priorities.
We want to hear from you if you:
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Have cardiomyopathy (or genetic risk of it)
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Are a parent/family member/carer/friend of someone who has cardiomyopathy
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Have been bereaved due to cardiomyopathy
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Are a healthcare professional involved in caring for people with cardiomyopathy
Underrepresented Groups
Often, research misses people from certain backgrounds, who are less likely to get involved in research or to respond to surveys. We want to make sure we hear from people from a really wide variety of backgrounds, to make sure our final top 10 is robust and inclusive. So, we are particularly keen to hear from:
- Young people (aged 16-25)
- Black and minority ethnic people
We are holding two online workshops in August 2023, and we are inviting people from the two backgrounds outlined below to join us.
- Young people aged 16-25 - Monday the 14th of August, 5pm to 7pm
- Black and minority ethnic people - Wednesday the 16th of August, 5pm to 7pm
Learn more about the workshops here. If you are interested in joining a workshop, please email: laura.cook@cardiomyopathy.org
About cardiomyopathy research
Despite ongoing research activity, in the UK and elsewhere, there are still many questions about cardiomyopathy that remain unanswered. Research is key to finding these answers and improving the lives of people with the condition.
Researchers and funders need to focus on researching the things that will make the most difference for people affected by cardiomyopathy, now and in the future.
Establishing the top 10 research questions for cardiomyopathy will ensure that, going forward, researchers and funders can prioritise the most meaningful research questions.
About the Priority Setting Process
The rigorous James Lind Alliance Priority Setting Partnership methodology is used to define the Top 10 research questions for a particular condition, in our case cardiomyopathy. All Priority Setting Partnerships follow the same method, set by the James Lind Alliance. Key steps include:
• Establish an expert group to guide the project, decide what is in scope
• Consult the community via a survey on what they think researchers should study (long list)
• Reduce the research questions, grouping those on similar topics (short list)
• Hold a priority setting workshop – with representatives from across the cardiomyopathy community – to produce the final top 10
• Communicate the top 10 to researchers and funders
Find out more on the James Lind Alliance website.
We are expecting the cardiomyopathy priority setting process to take just over a year, from spring 2023 to winter 2023/24.
Project Partners
We are pleased to have partnered with the following organisations:
• British Association for Cardiovascular Prevention and Rehabilitation
• British Society for Heart Failure
• British Association for Nursing in Cardiovascular Care
• Association for Inherited Cardiac Conditions (AICC)
• British Society of Echocardiography
• Primary Care Cardiovascular Society
Partners help us ensure the future research priorities project engages with as wide a group of people affected by cardiomyopathy, and those who care for or treat them, as possible.
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What happens next?
Join our mailing list and follow us on Facebook, Twitter and Instagram for further updates and opportunities to get involved in the Future Research Priorities process.
When we have the final top 10 research priorities for cardiomyopathy, we will share these with our cardiomyopathy community and the researchers that we work with.
We hope that the ‘cardiomyopathy top 10’ will inform future priorities for generations of researchers in the UK and across the world.
FAQs
I want to answer the survey, but don’t know what researchers are already studying
Please don’t worry whether or not the thing you think should be being studied is already being studied or not. Part of the process involves checking whether research questions have been answered or not.
Can I fill in a paper copy of the survey?
Yes – please contact us by email research@cardiomyopathy.org or call 01494 791224, in office hours (Mon – Fri 9am – 5pm) to request a paper copy.
Can I complete the survey over the phone?
Yes, please ring 01494 791224, in office hours (Mon – Fri 9am – 5pm) and we will be able to run through the survey with you.
I have another question – who can I contact?
Please email research@cardiomyopathy.org or call 01494 791224 in office hours (Mon – Fri 9am – 5pm) and we will endeavour to help.