RecruitingOBSERVATIONAL

The Heart Hive - Cardiomyopathy Study

The Heart Hive study is creating an online database for people in the UK diagnosed with heart muscle conditions (cardiomyopathy) or heart inflammation (myocarditis), and those with a family history of cardiomyopathy. It's an 'observational' study, meaning researchers will collect health information and DNA (from saliva) over time, without giving any new treatments. They want to see how these conditions affect people and understand the genetic links. Initially, they'll check how accurate people's self-reported health information is by comparing it to medical records. This research aims to improve our understanding of cardiomyopathy and could eventually lead to better ways to diagnose and treat it.

At a glance

Status

Recruiting

Sponsor

Imperial College London

Enrolment target

10,000

Start

09 Nov 2019

Estimated completion

01 Sep 2027

Cardiomyopathies Myocarditis

What is this study about?

This study, called 'The Heart Hive - Cardiomyopathy Study', is setting up an online registry and database. It's for people in the UK who have been diagnosed with cardiomyopathy (a disease of the heart muscle) or myocarditis (inflammation of the heart muscle). It's also open to people who have a close family member (like a parent, child, or sibling) with cardiomyopathy. By collecting information from many people, researchers hope to learn more about these conditions, including how they develop and how different genes might be involved.

Taking part would involve signing up online and providing details about your health and medical history, all from your own computer. For some participants, with their permission, the researchers will also look at their medical records to understand their condition better. A key part of the study involves looking at your genes. This means you might be asked to provide a saliva sample, which contains your DNA. They will then test this DNA to see if there are any specific genetic changes linked to your heart condition.

The main goal is to build a large picture of cardiomyopathy and myocarditis across a wide range of people. This kind of research is really important because it helps scientists and doctors to understand these conditions better. By doing so, they hope to find ways to improve diagnosis, develop new treatments, and ultimately improve the lives of people living with these heart conditions in the future.

Key takeaways

It's an online study for heart muscle conditions.
No clinic visits are needed.
You'll share your health information from home.
It aims to understand underlying causes, including genes.
It does not involve new treatments or medications.
Your contribution could help future patients.

Who may be eligible?

To take part in this study, you need to be an adult, aged 18 or older. It's open to both men and women. You must also be able to understand the study information and give your agreement to participate.

Specifically, the study is looking for people who have received a confirmed diagnosis of cardiomyopathy or myocarditis from a doctor. They are also including people who have a parent, child, or sibling with a confirmed diagnosis of cardiomyopathy.

However, there are some reasons why you might not be able to join. This includes if you have severe, untreated high blood pressure, or if your heart condition is primarily due to other heart problems like severe coronary artery disease (blocked heart arteries), primary problems with your heart valves, or heart defects you were born with. People who cannot give their own consent, or are considered vulnerable in other ways (like being under 18 or in prison), also cannot take part.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been diagnosed with cardiomyopathy or myocarditis?
Do you have a close family member (parent, child, or sibling) with cardiomyopathy?
Can you understand information about the study and agree to take part?
Is your heart condition *not* mainly due to severe blocked heart arteries, severe valve problems, or congenital heart defects?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you will first register online with 'The Heart Hive'. You'll then be asked to enter details about your health, medical history, and personal information directly into their online database. This is all done from your own home, so there are no clinic visits involved.

For some participants, the study will ask your permission to access your medical records from your doctors. This helps them to check and confirm the information you provide. You may also be asked to provide a saliva sample, which can be done at home and sent back to the researchers, so they can look at your genes. The study will also ask you to update your health information annually. The total duration of your participation will be ongoing, meaning you'll continue to provide updates each year for as long as you wish to be part of the registry. This is an observational study, so you won't be given any new medications or treatments as part of it.

Potential risks and benefits

A potential benefit of joining this study is that you would be contributing valuable information that could help scientists better understand heart muscle conditions, potentially leading to improved care for future patients. There are very few direct risks. The main inconvenience might be the time taken to enter data online and provide a saliva sample. Your personal and health information will be handled carefully to protect your privacy. You are free to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Imperial College London
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is cardiomyopathy?

Cardiomyopathy is a general term for diseases of the heart muscle, making it harder for the heart to pump blood around your body.

What is myocarditis?

Myocarditis is inflammation of the heart muscle, often caused by an infection.

Do I need to visit a hospital for this study?

No, this study is entirely online and involves providing information from your home. You might need to provide a saliva sample by post.

Will this study change my current medical treatment?

No, this is an observational study, which means it won't involve any changes to your current medical treatment or care.

What is genetic analysis?

Genetic analysis means looking at your DNA (the instructions inside your cells) to see if there are any specific changes that might be linked to your heart condition.

How to find out more

Rachel Buchan, MD PhD

info@thehearthive.org 0 207 351 8144 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.