What is the Heart Hive?
The Heart Hive is a platform designed by the Cardiovascular Genetics team and supported by Cardiomyopathy UK, to help connect patients and researchers together to improve cardiomyopathy treatment and care.
Patients have told us that they often struggled to find out how to take part in research unless they were attending clinics at large university hospitals.
The Heart Hive aims to make research more accessible to patients and allow researchers the opportunity to connect directly with a community of people with cardiomyopathy and myocarditis.
Who can register?
The Heart Hive is open to people with cardiomyopathy, a family history of cardiomyopathy or people with myocarditis.
It's quick to register on our website
The Heart Hive's Impact
The Heart Hive community has helped us learn about the impact of the COVID-19 pandemic on those with cardiomyopathy and we're continuing to gather information on the ongoing implications of the pandemic.
Cardiologist have used the Heart Hive community to gather opinions about dilated cardiomyopathy treatment options which has led to more research being developed (and funded), helping to address the concerns of the patient community.
The Heart Hive Cardiomyopathy Study is investigating the genetic factors involved in hypertrophic and dilated cardiomyopathy, allowing participants to take part completely online and send saliva samples through the post for genetic analysis.
The Heart Hive also offers patients the chance to take part in clinical trials matched to their diagnosis. We can send eligibility questionnaires to patients that match certain conditions and check if patients are suitable for further screening
How can I add my study to the Heart Hive?
Researchers: we welcome enquiries to offer research opportunities to the Heart Hive community. The Heart Hive is open to all researchers with an ethically-approved project and a recognised sponsoring institution.
Please contact us to discuss your project.
Links
- Find out more about the Heart Hive on our website
- Our Heart Hive COVID-19 paper on Open Heart Research