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10,000 heart patients join online registry to unlock secrets of cardiomyopathy

NCT ID NCT04612296

Knowledge-focused Sponsor: Imperial College London Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is building a large online registry of 10,000 adults with cardiomyopathy or myocarditis, plus those with a strong family history. Researchers will track participants over time to see how many experience serious events like heart failure, dangerous heart rhythms, or death. The goal is to better understand these heart conditions, not to test a new treatment.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this study could reveal patterns that help doctors better predict and manage heart complications in people with cardiomyopathy.
What could go wrong
This is an observational study, not a treatment trial. It collects data but does not test any therapy, so it cannot directly improve health. Results may take years and might not lead to clear changes in care.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 10,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Nov 2019

Expected to finish

Sep 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Eligible adult patients with cardiomyopathy in The Heart Hive registry

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Adult (age 18 and over), * Males and Females, * Capacity to provide informed consent, * Patients with a confirmed diagnosis of cardiomyopathy or myocarditis, * People with a family history of cardiomyopathy confirmed in a first or second degree relative. Note: Pregnant women are eligible. This study is observational and entirely separate from clinical care. Exclusion criteria: * Patients who lack capacity to consent for themselves, * Vulnerable groups (e.g. those under 18, prisoners, those in a dependent relationship, the mentally ill). * Patients with a confirmed history of coronary artery disease: * who have been informed by their treating physician that their cardiomyopathy is secondary to their coronary artery disease, or * who have undergone previous percutaneous coronary intervention or coronary bypass surgery * History of primary valvular heart disease or congenital heart disease * Severe, untreated or untreatable hypertension (systolic blood pressures routinely \>180 mm Hg and/or diastolic blood pressures \>120 mm Hg)

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Conditions

The condition(s) this trial relates to.

cardiomyopathy dilated cardiomyopathy hypertrophic cardiomyopathy myocarditis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Cardiomyopathies Myocarditis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    1 site. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Imperial College London

    RECRUITING

    London, United Kingdom

    Contact Email: •••••@•••••

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