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Follows adults with heart muscle disease through an online registry and genetic analysis

Collects health information and genetic samples from adults with cardiomyopathy or myocarditis over time.

Key facts

Who runs it
Imperial College London
Where
London, United KingdomSee the site
Trial code
Registry title
The Heart Hive - Cardiomyopathy Study
Status
Recruiting
People taking part
10,000 people, planned
Started
9 Nov 2019
Expected to end
Sept 2027
Type of study
Observational
Treatments tested
  • Research genetic analysis
Record updated
27 March 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for adults with a confirmed heart muscle disease (cardiomyopathy) or heart muscle inflammation (myocarditis), or with a close relative who has cardiomyopathy. It is an observational study.

Age
18 years and over
Sex
Men and women
Disease stage
Confirmed cardiomyopathy or myocarditis. Or a family history of cardiomyopathy confirmed in a first or second degree relative.

Main reasons for not taking part

  • Cannot give informed consent for themselves
  • Under 18, or in other vulnerable groups (for example prisoners, people in a dependent relationship, the mentally ill)
  • Coronary artery disease causing the cardiomyopathy, or earlier coronary stenting or bypass surgery
  • Primary valve disease of the heart or congenital heart disease
  • Severe high blood pressure that is untreated or cannot be treated (above 180 mm Hg systolic and/or 120 mm Hg diastolic)

The registry criteria, word for word

Show all 12 criteriaShow less

Who can take part

  • 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

Who cannot take part

  • who have undergone previous percutaneous coronary intervention or coronary bypass surgery
  • 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
  • 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)
  • Patients who lack capacity to consent for themselves,
  • Vulnerable groups (e.g. those under 18, prisoners, those in a dependent relationship, the mentally ill)

Where in United Kingdom

  • Imperial College LondonLondon, United KingdomContact: Rachel Buchan, MScTaking people

About the trial

What the trial wants to find out

This is an online registry and database of patients with cardiomyopathy and myocarditis, coupled with an observational study of cardiomyopathies.

Treatments tested

  • Research genetic analysis

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
A Longitudinal Observational Study of Self-reported Cardiomyopathy in the Heart Hive
Plain-language title
Follows adults with heart muscle disease through an online registry and genetic analysisGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
27 March 2026