The Heart Hive research project crowdfunder has launched

15th May 2019

Over the last few months, we have been working with researchers at Imperial College London to tackle one of the biggest problems in cardiomyopathy and myocarditis research.

Feedback from people living with cardiomyopathy and myocarditis reveals many don’t know how to go about using their experiences to take part in the latest research and are frustrated at the lack of opportunities to engage with researchers. At the same time, researchers from around the world struggle to find willing research participants and subsequently have to delay or abandon their projects.

In response to this, Dr James Ware, consultant cardiologist and research group lead at Imperial College London, and Angharad Roberts, clinical geneticist and research fellow at Imperial College, have developed The Heart Hive — a ground-breaking project that aims to make research easily accessible to all. 

The Heart Hive is an online platform that brings together research-willing participants from around the world and connecting them with active and collaborative researchers, to give more patients the chance to make a difference. Heart Hive users will see what research is going on and self-enroll in studies that interest them. The platform will facilitate research participation from home, rather than relying on travel to distant specialist centres - for example, by collect genetic material from saliva using kits sent in the post, and gathering clinical information from participants using a web portal and smartphone app. 

Cardiomyopathy UK has been helping to develop The Heart Hive platform and will be supporting the project with a grant from the charity's Alexander Jansons Fund. We are also encouraging individuals to donate to the project via our crowdfunder site.

 

Heart Hive is due to go live in Summer 2019. In the meantime, you find out more at ww.thehearthive.org.