Registry for patients with cardiomyopathy and myocarditis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study utilizes The Heart Hive, an international online registry for patients with clinically diagnosed cardiomyopathy or myocarditis, as well as those with a family history of these conditions. Participants will provide self-reported demographic and health data, which will be collected and analyzed over time. The study will recruit patients with dilated (DCM) and hypertrophic (HCM) cardiomyopathy for an observational study that includes genetic analysis and validation of self-reported diagnoses against medical records. The pilot phase aims to validate the approach with 200 patients, focusing on the genetic architecture of these conditions.

Why it matters

Who can join: the full rules

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)

Where it's running

• Imperial College London
  London, United Kingdom Recruiting

Study contacts

• Principal investigator: James Ware — Imperial College London
• Study coordinator: Rachel Buchan, MD PhD
• Email: info@thehearthive.org
• Phone: 0 207 351 8144

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.