The Heart Hive is a grassroots project for people affected by heart muscle disease, coordinated by Imperial College London and Cardiomyopathy UK, and powered by the public. This project will save lives and empower those affected by the heart muscle diseases cardiomyopathy and myocarditis by giving them the chance to help drive the research into their condition. More than 300,000 people in the UK are living with these conditions, and they should all have the opportunity to participate in advancing knowledge and treatment.
In response to feedback from patients and the public, and with the support of the specialist national charity for people affected by cardiomyopathy, a collaborative research team centered at Imperial College London is growing an online community to connect research-willing participants with active researchers and projects, to improve healthcare and quality of life in those affected by heart muscle disease. That community is called the Heart Hive.
We need your help
We are asking you to donate to support this work, and to help us spread the word.
Valuable funding will help develop an online platform to establish, grow and support this community and translating shared knowledge and data into tailored healthcare for the people who need it most.
Lots of people living with heart muscle disease want to be proactive in tackling their condition, to help move science and healthcare forwards toward improved treatments and a better quality of life for themselves and the larger community. Many people report huge benefits through involvement in research, as they are empowered to shape the research agenda, and know their participation will ultimately save lives. Research is vital and the more people that participate in research the more powerful it is.
However, many patients say that they can’t find a way to get involved. That’s because opportunities may be concentrated around a handful of universities and hospitals, and many patients either can’t get involved, or need to travel long distances to take part. This is bad for patients, and bad for research.
We are building an online community of 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. People will see what research is going on, be able to self-enrol in studies that interest them, and be able to champion the work that’s important to them.
By enrolling online and providing their own data, participants will allow research to move faster. The platform will facilitate research participation from home, rather than relying on travel to distant specialist centres - for example, we can collect genetic material from saliva using kits sent in the post, and gather clinical information from participants using a web portal and smartphone app. Since participants control their data and decide which researchers can use it, they set the direction of the research and ensure researchers focus on real patient priorities.
Why is crowdfunding important?
We have secured seed money to design and build a secure web platform. To support as many participants as possible and unlock the full potential of this community we need your help and support. We are looking for further funding to
- Spread the word to reach as many people as possible
- Collect samples from willing volunteers, and sequence their DNA
- Fund web hosting and platform development for at least two years: long enough to show that together we can make this work
Once the community is established, and we can show that it is working, we will be able to approach medical research charities funders for ongoing funds to support individual projects and to maintain and grow the community.
Every £150 raised enables us to offer our pilot projects to one more participant.
- £125 pays for the full sequencing of genes linked to inherited heart muscle disease for one participant
- £15 pays to collect a saliva sample through the post, and extract DNA
- £5 pays to extract DNA from one saliva sample
- £1 is a vote for the Heart Hive, and you will be counted amongst our supporters
Cardiomyopathy UK are also directly supporting this project from their Alexander Jansons Fund. They have committed to match donations up to a total of £20,000.
This will be released in £5000 increments, each time the crowdfund passes a £5000 milestone.
Where does the money go?
Cardiomyopathy UK are supporting this project, and are collecting crowdfund donations for the Heart Hive. As Cardiomyopathy UK is a registered charity, donations from UK taxpayers are eligible for GiftAid, and attract further tax relief for higher and additional rate taxpayers.
- You donate £100 - the charity can claim a further £25 Gift Aid, making your donation worth £125.
- If you are a higher rate taxpayer you can claim back a further £25 in tax relief.
Will I benefit by supporting the Heart Hive?
In addition to a warm sense of satisfaction from supporting this vibrant community, and our heart-felt thanks, we are offering a range of rewards to our backers. These have been carefully chosen to help us spread the word and build our community. If you would prefer not to receive a reward then this can be specified later, and all of your donation will go directly towards the platform.
Can I join the Heart Hive?
If you are interested in joining the community then please visit our website where you can join our pre-launch mailing list. We will then let you know when the web portal goes live so that you can be the first to sign up.
You will be able to register if you:
- have a diagnosis of cardiomyopathy or myocarditis
- have a family history of cardiomyopathy
- have had a genetic test that reveals you have a genetic predisposition to cardiomyopathy
When will the Heart Hive go live?
The web portal will be available this summer, with your support