A Longitudinal Observational Study of Self-reported Cardiomyopathy in the Heart Hive

18IC4954

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

2019-11-09

2024-11-09

2024-11-09

Recruiting

10000

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)

{'studyType': 'OBSERVATIONAL', 'patientRegistry': True, 'targetDuration': '50 Years', 'designInfo': {'observationalModel': 'COHORT', 'timePerspective': 'PROSPECTIVE'}, 'bioSpec': {'retention': 'SAMPLES_WITH_DNA', 'description': 'Saliva'}, 'enrollmentInfo': {'count': 10000, 'type': 'ESTIMATED'}}

2024-03-06