New ways of connecting patients and researchers are giving new hope of finding cures for rare heart conditions.

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. 

“We want to put patients in the driving seat and provide them with a platform to connect them with research opportunities, show them what research is going on, and allow them to self-enrol in studies” Dr James Ware

The Heart Hive is a partnership between scientists and the public so that research can be done faster and cures and treatments can be discovered sooner. The innovative project is launching soon from researchers at Imperial College London, Royal Brompton Hospital and the MRC London Institute of Medical Sciences. They are currently running a Crowdfunder campaign to raise funds to fully launch the platform and run a pilot research project to prove the idea works - which is almost funded, and seeking final donations to get the project over the line. 

For the over 300,000 people in the UK with heart muscle disease,  treatments can help manage symptoms, but currently there is no cure. Research is the key to understanding these progressive heart conditions and to developing new treatments and better care. However, research opportunities are often clustered around specialist centres which are not accessible to all patients. This propelled Dr James Ware a consultant cardiologist and Dr Angharad Roberts a consultant clinical geneticist to look for a solution. Many patients report that although they want to participate in research – they don’t know how to do so in an easy way.  Specifically, patients pointed out that unless they attend one of a handful of specialist hospitals or research centres, it can be incredibly difficult for them to find a way to get involved in research.

The Crowdfunder campaign has the backing of Cardiomyopathy UK, the specialist national charity for people affected by cardiomyopathy, Joel Rose, the chief executive for the charity said: “Cardiomyopathy UK is delighted to be supporting this project. It’s bringing together researchers and people with heart muscle conditions and will prove a massive boost to research assets. And ultimately, it will help lead to better treatments for patients”. 

Researchers face major challenges in recruiting eligible patients and maintaining patient engagement.  Contemporary genetics requires larger cohorts for well-powered studies; these are beyond the reach of single centres and even stretch traditional collaborative networks. At the other end of the spectrum, stratified approaches might demand recruitment of individuals with a very specific set of characteristics - access to a large patient pool allows for identification of the rare subset required.  For longitudinal studies, looking at risk factors and outcomes, ongoing engagement is key.