We support clinical research by providing patient insight and sometimes work with other organisations to ensure research funding is directed in the best way.
We offer patient insight to researchers developing research proposals so that their projects can lead to real benefits for people with cardiomyopathy. We also provide ongoing advice to researchers for the duration of their research, and support them in sharing their findings with the wider community. The research that we support in this way has to comply with the guiding principles as agreed by the international network of cardiomyopathy charities. You can read these guiding principles here
We also work with groups and individuals who are interested in funding cardiomyopathy related research to make sure that the projects they support can make a significant impact and change lives for the better. Below you can find some more information about these research projects.
We have teamed up with researchers at Imperial College London to build an online platform that brings together cardiomyopathy researchers and patients who may be interested in participating in clinical research. We were able to award a grant of £120,000 through the Alexander Jansons Fund, Additional funds were raised through a Crowdfunder campaign.
We're part of the BHF Funded CureHeart research team, co-led by Professor Hugh Watkins at the University of Oxford and Dr Christine Seidman of Harvard Medical School, which aims to find the world's first cures for inherited cardiomyopathies. The CureHeart team were winners of The British Heart Foundation's Big Beat Challenge and were awarded a £30 million research grant by the charity to bring about transformational solutions in heart and circulatory disease.
This cutting-edge European study is investigating using ‘digital twins’ to improve the diagnosis and management of hypertrophic cardiomyopathy (HCM). The condition can be caused by different genetic changes and people with HCM are affected differently – from the symptoms they experience to how quickly they progress. The team are developing computer models of unique variations of HCM. The aim is to enable risk stratification (grouping people based on the likelihood they will experience a particular outcome) and personalised treatment.
This UK-wide study aims to understand the best test(s) to investigate heart failure. Current NHS practice includes a coronary angiogram (which is an expensive and often uncomfortable test) to rule out coronary artery disease. But there are other common causes of heart failure including dilated cardiomyopathy (DCM). CROSS-HF aims to help people with heart failure be diagnosed faster and reduce the need for a coronary angiogram.
Vascular dementia and heart failure severely affect human health leading to quality-of-life deterioration and even death. Both are associated with comorbidities (having more than one medical condition at once) that affect all organs, particularly the brain and heart. The therapeutic targeting of these comorbidities can treat cognitive impairment and heart failure but often there are also microvascular (small blood vessel) changes too, the diagnosis of which is limited at present. The project aims to identify novel diagnostic techniques that will prevent cognitive and heart disease progression, limit morbidity and improve the quality of life.
In 2020 we worked with the Arrhythmogenic Cardiomyopathy Trust to fund a two year research project at University College London. This project aims to create an arrhythmogenic cardiomyopathy biobank resource that will be accessible to other researchers, and help to kick start research into this form of cardiomyopathy.
