iiinova — where your digital self keeps evolving

The Heart Hive @thehearthive.bsky.social · 11/09/2026

🔊 The Heart Hive is launching a major new databank. We’re asking people with rare or inherited cardiovascular conditions across the UK to donate their health data to help advance our understanding of heart health. Visit 👉 thehearthive.org/databank to find out more.

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The Heart Hive @thehearthive.bsky.social · 22/07/2026

Our new onboarding process has been co-developed with the Heart Hive Steering Committee 👉 bit.ly/HHresearchers. If you are looking to invite patients to a research study or PPI project through the Heart Hive, download and complete a support request form and email it to info@thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 15/04/2026

The PREG-HEART study is putting research into the hands of patients and pregnant women. ✨Want to help us spread the word? 👉Visit bit.ly/preg-heart, or email info@thehearthive.org for a poster to put up in your local hospital or community.

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The Heart Hive @thehearthive.bsky.social · 07/01/2026

🎉Over 1,000 people have now signed up for the Heart Hive and are volunteering to take part in cardiomyopathy and myocarditis research. Want to invite more people to take part in your study? Email 👉 info@thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 17/12/2025

A few snapshots from the British Inherited Cardiovascular Conditions Society Annual Conference last week – thank you so much to everyone who came to chat to us and is helping to spread the word 🙌

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The Heart Hive @thehearthive.bsky.social · 06/11/2025

🔊 The Heart Hive Cardiomyopathy study is now open to people living in the UK with a known genetic risk of cardiomyopathy, even if they don’t have a diagnosis. 👉 Learn more at thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 31/10/2025

🔊 We’ve added a new study to the Heart Hive! Researchers at the University of Oxford are using cutting-edge MRI scans of the heart to better understand how the heart changes in early hypertrophic cardiomyopathy. 👉 Email jack.bell@magd.ox.ac.uk for more information.

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The Heart Hive @thehearthive.bsky.social · 23/10/2025

A team at the University of the West of England (UWE Bristol) are exploring views on the use of questionnaires to assess the palliative care needs of people with heart failure. To take part in an online or telephone interview, email harley.anderson@uwe.ac.uk or complete this form 👉 bit.ly/3WRYtPm.

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The Heart Hive @thehearthive.bsky.social · 14/08/2025

Up to 80% of the Heart Hive community has never taken part in heart research before. We want as many people as possible have the opportunity to help with studies that will change the future of cardiomyopathy and myocarditis care. 👉 Learn more at thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 06/08/2025

New research comparing the number of women and men who had variants in certain genes found that mutations in desmoplakin (DSP) were more common in females with DCM, and mutations in titin (TTN) were more common in males with DCM. Read more: 📲 bit.ly/3UriHOZ

bit.ly

Differences found in types of cardiomyopathy affecting men versus women | Royal Brompton & Harefield hospitals

29 July 2025Researchers at Royal Brompton and Harefield hospitals have found that there are differences in the causes of dilated cardiomyopathy (DCM) in males compared to females.

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The Heart Hive @thehearthive.bsky.social · 30/07/2025

Our community is made up of people from all across the UK (and beyond), with genetic samples collected through the post - no travel needed. We want research to be accessible to everyone, regardless of where you live. 👉 Learn more thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 24/07/2025

If you would like a pack of Heart Hive materials (or swag) to share in your community, email us at info@thehearthive.org!

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The Heart Hive @thehearthive.bsky.social · 24/07/2025

Last week we went to the Cardiomyopathy UK Midlands HCP Study Day to share what we’re doing with specialists from across the UK. Thank you to everyone who has been helping us to open up research to more people, and to all the Heart Hivers who have given up their time to take part in research ❤

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The Heart Hive @thehearthive.bsky.social · 03/07/2025

✅ You can join the Heart Hive if you have a family history of cardiomyopathy, or if you’ve had a genetic test revealing an inherited risk for cardiomyopathy, even if you haven’t been diagnosed yourself. Find out more at 👉 thehearthive.org.

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The Heart Hive @thehearthive.bsky.social · 18/06/2025

The Heart Hive is hosting a study to learn more about cardiomyopathy. We’re looking for people with HCM, DCM, ACM and Takotsubo in the UK, aged 18 and over. We’re asking for people to complete health surveys once a year and send us a saliva sample through the post Find out more at thehearthive.org

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The Heart Hive @thehearthive.bsky.social · 05/06/2025

We want to learn more about the genetics of cardiomyopathy. Are you over 18, in the UK and interested in taking part in research? Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study.

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The Heart Hive @thehearthive.bsky.social · 30/05/2025

We’ve added a new study to the Heart Hive! If you are: ✅ Over the age of 18 ✅ Living in the UK ✅ Have a diagnosis of ACM and do not have a pacemaker or defibrillator fitted Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account? Visit thehearthive.org to join us.

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The Heart Hive @thehearthive.bsky.social · 07/05/2025

Your Heart Hive data is stored in a secure location approved by Imperial College London, and used in line with GDPR regulations and data protection law. We will never use it for research without your consent. Read more of our FAQs here: 📲 bit.ly/hh_faqs

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The Heart Hive @thehearthive.bsky.social · 30/04/2025

New research suggests that women with high blood pressure during pregnancy, including preeclampsia, are at a greater risk of developing dilated cardiomyopathy (DCM) than women without high blood pressure during pregnancy. Read more: 📲 bit.ly/3YQoq3e #MaternalHealth #ResearchSpotlight

bit.ly

Hypertension during pregnancy linked with dilated cardiomyopathy risk | Imperial News | Imperial College London

New research shows a significant association between hypertensive disorders in pregnancy and an increased risk of developing dilated cardiomyopathy.

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The Heart Hive @thehearthive.bsky.social · 16/04/2025

In a study commissioned by the UK HRA, only 35% of people felt confident that health & social care research findings would be shared with the public without delay: bit.ly/3El0iPk. Visit thehearthive.org/research to find out about studies that the Heart Hive community have contributed to.

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The Heart Hive @thehearthive.bsky.social · 09/04/2025

Signing up for the Heart Hive is quick and easy! 📲 bit.ly/hearthive If you are living with cardiomyopathy would like to contribute to research, visit thehearthive.org to create an account. Already signed up? Don’t forget to reactivate your account on our new website. #ParticipateInResearch

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The Heart Hive @thehearthive.bsky.social · 04/04/2025

We’ve added a new study to the Heart Hive! If you are: ✅ Over the age of 18 ✅ Living in the US ✅ Have a diagnosis of cardiomyopathy Sign into your Heart Hive account to find out more: bit.ly/hh_login. Don’t have an account yet? Visit thehearthive.org to join us.

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The Heart Hive @thehearthive.bsky.social · 26/03/2025

Researchers have shown that while DCM is more common in men, current diagnostic criteria may be leading to underdiagnosis in women. Listen to an interview with senior author, Dr Upasana (Paz) Tayal, discussing these findings: 📲 bit.ly/4iHSCFs #ResearchSpotlight #HeartResearch #Cardiomyopathy

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The Heart Hive @thehearthive.bsky.social · 19/03/2025

We’ve made some updates to our website! Interested in heart research? ❤🔬 Learn more about our mission, our history, and how you can get involved: 📲 bit.ly/hh_aboutus #HeartResearch #ParticipateInResearch

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The Heart Hive @thehearthive.bsky.social · 06/03/2025

Heart disease is the leading cause of death in women worldwide. More research is needed to improve our understanding of sex-specific differences in the development, progression and treatment of heart conditions. #AccelerateAction #IWD2025 #HeartResearch

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The Heart Hive @thehearthive.bsky.social · 28/02/2025

Finding a specific genetic cause could transform the care of rare or inherited heart conditions. More research is needed to understand the impact of genetics and improve future treatment. To contribute to this research, visit thehearthive.org. #RareDiseaseDay

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The Heart Hive @thehearthive.bsky.social · 19/02/2025

💡 #ResearchSpotlight Emma Jennings is studying Biomedical Science and was diagnosed with dilated cardiomyopathy at the age of 1. Her paper on the needs and potential research avenues for young people with DCM combines her lived experience and her perspective as a scientist. Read more: bit.ly/4gFS6WL

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The Heart Hive @thehearthive.bsky.social · 14/02/2025

We are happy to be supporting Team Titin! Team Titin Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research. Learn more: TitinMyopathy.com

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The Heart Hive @thehearthive.bsky.social · 12/02/2025

The Heart Hive will be unavailable for a short time overnight tonight for upgrades and maintenance, expected between 1am and 2am UK time. If you have any problems accessing your account after this, please contact us.

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The Heart Hive @thehearthive.bsky.social · 05/02/2025

February is #HeartMonth! Want to get involved in heart research but not sure how? The Heart Hive is an online portal where you can sign up to take part in research studies. Go to thehearthive.org to find out more and register today. #NationalHeartMonth #HeartResearch #ParticipateInResearch

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The Heart Hive @thehearthive.bsky.social · 10/12/2024

The Heart Hive will be unavailable for a few hours today for maintenance - expected between 3:30pm and 9:30pm

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The Heart Hive @thehearthive.bsky.social · 28/11/2024

Thrilled to pick up the "Most Innovative" award at the RBHH Research Showcase @gstt-nhs.bsky.social. We want to open up research to more people. Sign up if you have cardiomyopathy or myocarditis (thehearthive.org) or if you have a study you'd like to add to the Heart Hive - get in touch!

image of award trophy for "most innovative"

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Reposted by The Heart Hive

NHLI @imperialnhli.bsky.social · 26/11/2024

Researchers from NHLI, @mrc-lms.bsky.social & UCL have identified that dilated cardiomyopathy, the main reason for heart transplantation, can be caused by the small effects of thousands of genes – and not just one 🫀 @seanlzheng.bsky.social @jamesware.bsky.social www.imperial.ac.uk/news/258537/...

imperial.ac.uk

Researchers find new genetic explanation for heart condition | Imperial News | Imperial College London

Researchers from the MRC Laboratory of Medical Sciences in collaboration with UCL have identified new genes involved in Dilated Cardiomyopathy.

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The Heart Hive @thehearthive.bsky.social · 26/11/2024

New activities added to the heart hive: - Study opened for people who are waiting for cardiac resynchronisation therapy (CRT) device -Study looking at genetics & cardiomyopathy - looking for people with ARVC, Takotsubo, HCM & DCM Signup at thehearthive.org & learn more

new research opportunities for people with takotsubo, Arrhythmogenic Right Ventricular Cardiomyopathy and people who are waiting for a CRT device

register today at the heart hive dot org

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Reposted by The Heart Hive

The Heart Hive @thehearthive.bsky.social · 22/11/2024

We want to learn more about the genetics of Takotsubo cardiomyopathy. Are you over 18, in the UK and interested in taking part in research? Go to thehearthive.org to learn more about the Heart Hive Cardiomyopathy Study. #takotsubo #research #cardiomyopathy

Diagnosed with Takotsubo? Help us learn more about the genetics of takotsubo. FInd out more - the heart hive - thehearthive.org

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The Heart Hive @thehearthive.bsky.social · 22/11/2024

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The Heart Hive @thehearthive.bsky.social · 16/11/2024

An excellent day at the Cardiomyopathy UK National Conference 2024! Lovely to see so many people interested in the Heart Hive’s mission to open up research to more people with #cardiomyopathy and #myocarditis

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