Why there's a buzz around Heart Hive research project

28th January 2019

This article is taken from our January issue of My Life magazine. You can read the whole magazine here, or to subscribe to receive a free copy via email or post please sign up here.

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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 help improve understanding and treatment of the conditions.

In response to this, researchers at Imperial College London, working with Cardiomyopathy UK, believe they have found a solution.

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 been working on the launch of Heart Hive — a ground-breaking project that aims to make research easily accessible to all.

Heart Hive will use the latest technology to allow people to participate in research from their own home with genetic material collected from saliva, using kits sent in the post.

As Angharad explains: “More than 300,000 people in the UK are living with cardiomyopathy and myocarditis and research is the key to understanding these conditions and developing new treatments.

“Many want to help move science and healthcare forwards toward improved treatments and a better quality of life for themselves and the larger community, but it can be difficult to find a way to get involved,” she adds.

“Heart Hive will make research accessible to everyone.

“All people will need is an internet connection, a computer or smart phone and a postal address.

“Rather than relying solely on a handful of hospitals and doctors, patients will sign up through the web-portal, enter their own health information and decide which researchers can use it.” 

The Heart Hive will connect this group of willing research participants with active and collaborative researchers from around the world, so participants will see what research is going on and be able to self-enrol in studies that interest them.

Visit thehearthive.org to learn more about the project and sign up to the mailing list to be notified when The Heart Hive platform goes live in March 2019