Cardiomyopathy Awareness Week

This week marks Cardiomyopathy Awareness Week 2023, a time when the Global Heart Hub, in collaboration with major cardiomyopathy charity groups worldwide, sheds light on the importance of genetic testing in cardiomyopathy care. Cardiomyopathy, a condition that affects the heart muscle, can be serious but can be managed well.

Understanding the genetic basis of the disease is crucial for individual patients, as it helps explain why their hearts aren't functioning optimally and provides insights into how cardiomyopathy might impact their families.

Research's Vital Role

Research has revolutionised our understanding of cardiomyopathy. By generously donating their genetic samples and time to research, patients play an essential role in advancing treatments and diagnoses. More research is needed to unravel the complete genetic landscape of cardiomyopathy, and every contribution helps pave the way toward better outcomes for patients.

Introducing the Heart Hive

Since 2019, the Heart Hive has been dedicated to connecting patients with increased research opportunities. As an online platform, the Heart Hive welcomes individuals with cardiomyopathy, myocarditis, or a family history of cardiomyopathy to register. By sharing information about their diagnosis, participants are matched with relevant research studies or clinical trials. The Heart Hive empowers individuals to decide whom to share their data with and which studies they wish to participate in, putting patients in control of their own health journey.

The Heart Hive Renovation

Currently undergoing a renovation, the Heart Hive is in the process of moving to a new platform. However, you can join our waiting list to be the first to know when we launch our new and improved website. Stay connected with us on social media platforms such as Twitter, Facebook, or Instagram for updates and news about our progress.

Join Our Mailing List Here

Find Out More

To delve deeper into the genetics of cardiomyopathy, watch a short video featuring heart hive founder, Prof. James Ware. For more information about the Heart Hive and its initiatives, please visit our website homepage

Together, let's raise awareness, support research, and improve the lives of individuals affected by cardiomyopathy. Join us in our mission to advance understanding and find better solutions for this condition.

#CardiomyopathyAwareness2023 #WhyGeneticsMatters #TheHeartHive #Cardiomyopathy

How is COVID-19 affecting people with cardiomyopathy?

The Heart Hive COVID-19 study has now been published in Open Heart by researchers at Imperial College and Royal Brompton Hospital (Guy's and St Thomas' NHS Foundation Trust)

The study has demonstrated that a third of the surveyed patients with cardiomyopathy felt that their physical health deteriorated as a result of the pandemic when assessed shortly after the first wave of the pandemic. This was a significantly higher proportion than those that had reported a suspected COVID-19 infection.

The study further illustrated that many patients had had outpatient clinic appointments rescheduled (29%) or cancelled (16%), and missed clinical investigations (38.9%), procedures (7.6%) or doses of medication (5.3%). Additionally, 40.4% of patients with cardiomyopathy felt that their health needs could not be met by telemedicine.

The findings also indicated that the psychological impact of the pandemic did not differ significantly between patients with cardiomyopathy and subjects without heart disease. Patients with cardiomyopathy did feel that they may be more susceptible to COVID-19 infection and suffer more severe illness if infected.

Approximately 1 in 5 patients with cardiomyopathy had received a recommendation to ‘shield’; a higher proportion of the patients that had received a recommendation to shield reported worsening of their cardiomyopathy symptoms.

We also conducted two other parallel research initiatives alongside the Heart Hive COVID-19 study, which are also published in this article. By studying participants of the Royal Brompton & Harefield Hospital Cardiovascular Research Centre Biobank, we found that patients with DCM and HCM were no more likely to be infected with COVID-19 than the rest of the UK population. However, of the patients with DCM and HCM that were studied, those that had been infected with COVID-19 had more frequently required treatment in hospital during the first wave of the pandemic.

Finally, we used NHS Digital Hospital Episodes Statistics to illustrate that there was a 17.9% year on year reduction in cardiomyopathy-related hospital admissions in 2020, with the lowest hospitalisation rate occurring during the first UK lockdown.

To the best of our knowledge, this is the first study to assess both the direct and indirect effects of the COVID-19 pandemic on patients with cardiomyopathy. We hope these findings can be used to adapt clinical services to meet patients’ health needs as the pandemic evolves.

We are very grateful to the 207 Heart Hive participants who contributed to this research initiative and to Cardiomyopathy UK for their ongoing support of this study and the Heart Hive. If you’re taking part in the study, please keep completing your COVID surveys to help us see how COVID-19s effect on people with cardiomyopathy has been changing during the course of the pandemic and with the developments of vaccines and new treatments.

If you haven't signed up the the Heart Hive and would like to, you can find out more on our home page

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