The Heart Hive

🔊 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.

🔊 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.

Study Summary: Sex Differences in the Genetic Cause of DCM This is a summary of an original article titled “Sex Differences in the Genetic Causes of Dilated Cardiomyopathy” published in the Journal of the American College of Cardiology in August 2025 by Mangino et al. You can read the article online at www.sciencedirect.com/science/article/pii/S0735109725064782. This study was funded by the British Heart Foundation. A huge thank you to all of the patients who donated their time and data to the GO-DCM study and the UK Biobank.

We’ve made a plain language video summary of the article “Sex Differences in the Genetic Causes of Dilated Cardiomyopathy”, originally published in the Journal of the American College of Cardiology in August 2025 by Mangino et al.

Watch now 👉 bit.ly/3VWaBOX.

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.

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.

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

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.

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

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 ❤

✅ 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.

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

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.

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.

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

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.

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

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.

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

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.

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

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

Our partners @bhfcrc.bsky.social are connecting patients, families, and researchers to ensure studies are designed in partnership with those living with heart conditions. 💙

Signing up takes 15 minutes! Get started here: bit.ly/hh_bhfcrc

#HeartHealth #PatientPowered #ResearchMatters

Women missing out on treatment for cardiovascular disease - British Cardiovascular Society Women still missing out on treatment for their No 1 killer—cardiovascular disease. Despite major progress in disease management, they are underdiagnosed and undertreatedDedicated heart champions, hubs...

Read more about the 2024 expert consensus statement on the diagnosis and treatment of women with heart disease: bit.ly/4bsg3jk

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

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

💡 #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

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

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.

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

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

image of award trophy for "most innovative"

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!