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  • Writer's pictureThe Heart Hive

A huge thanks from the Heart Hive on our first birthday

Thank you! It’s our birthday and we’re celebrating with the 500-strong community who signed up to help save lives by advancing research into heart disease. You are amazing! We created the Heart Hive last year to provide a new way to connect people with cardiomyopathy and myocarditis directly to researchers, making research accessible to all. This is a huge thank you to our community - for joining the Heart Hive, for signing up to research studies, and for making a difference. This year has been very challenging for everyone, but with your help we’ve learned that our innovative approach to research really works. Traditional research studies are facing disruptions with COVID-19 restrictions. The Heart Hive offers a way to take part in research without travelling from your home. We can send surveys via our web platform and collect DNA samples through the post. Which is good to know, because we still need your help with two vital studies: The Heart Hive Cardiomyopathy Study Our first study - The Heart Hive Cardiomyopathy Study - uses data from people in the UK with a diagnosis of hypertrophic cardiomyopathy (HCM) or dilated cardiomyopathy (DCM), to learn more about the causes of these diseases, which we hope will lead to new treatments. The Heart Hive community and this study are huge steps forward in how research is run and made available directly to you. Your participation is vitally important to prove this approach works, so we can apply for grant funding to grow our community, and so your data can contribute to answering those all-important questions about cardiomyopathy. IT’S NOT TOO LATE TO TAKE PART! Over 200 members of the Heart Hive community have already signed up to the Cardiomyopathy Study, but we still need more of your crucial contributions. Taking part is simple – it just involves completing an eConsent form and a health survey: log in to your account here to view full details or sign up here. We’re also collecting saliva samples through the post to perform genetic analyses and we’ll be sending out follow-up surveys to our first participants shortly. The Heart Hive COVID-19 Study We launched the COVID-19 Study in July in response to the pandemic. Please join now. During this time of uncertainty patients are asking if cardiomyopathy increases vulnerability to COVID-19. We also need to understand if measures to reduce the spread of the virus are causing harm by disrupting normal health care or creating other problems through isolation. We’ve also opened up the Heart Hive for people who want to join us as healthy volunteers and be part of our comparison group. A big thank you to all who’ve already registered and signed up to the study. We will be submitting our first analysis and early results for publication at the end of this year in order to reach doctors, hospitals and commissioners as soon as possible. If you haven’t signed up yet then please join up now, and encourage others to join so we can provide the clearest possible picture of how the pandemic is impacting our community and their healthcare. Future Plans We will be submitting our first results from our COVID-19 study and the Cardiomyopathy study for publication in the medical literature in the coming months. We will share the outcomes with you as soon as they are available. Those studies will not be ending, and more results will continue to be released year on year. In the next year we will be making more studies available directly to our community and we’ll be in touch to let you know if you’re eligible to sign up. Thank you again from the Heart Hive Team

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