Monitoring a patient cohort helps to provide us with valuable insight into how myocarditis presents, reacts to medication and why some hearts recover, and some don’t. We currently have a patient cohort of 250 that we use to analyse their DNA for genetic predisposition and proteomic data for markers of the disease and activity. The patient cohort plays an important role in helping us take the steps to making diagnosis simpler and faster. We would love to increase this to at least 1000 patients but it costs us £1000 per patient to add them to the cohort.
Our trials are on an invite-only basis, as we select patients presenting with specific criteria.
As part of our commitment to monitoring as many patients as we can with myocarditis, we supply funding to the innovative project that is The Heart Hive. A ground-breaking new project – Heart Hive – empowers people in the UK who want to help cure heart muscle disease, by helping them to directly contribute to the development of treatments for the condition. The platform allows people with a heart muscle disease (cardiomyopathy or myocarditis) to get in contact with scientists undertaking new research and sign up to take part. This is of vital importance in the understanding of myocarditis in the “real world” as it is a partnership between scientists and the public so that research can be done faster, and cures and treatments can be discovered sooner.
Alexander Jansons has always part – funded a Research Nurse. This role includes talking to patients about research studies and involving suitable patients to take part. The research nurse sees patients, alongside the research fellows, and is involved with collecting and managing research samples.
The Research nurse is a vital part of our commitment to supporting young researchers and to furthering the effectiveness of our research programmes.