An observational study in Cardiomyopathies and Myocarditis, sponsored by Imperial College London. Recruiting at 1 site in United Kingdom. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-03-27.
Sponsored by Imperial College London · Observational
This is an online registry and database of patients with cardiomyopathy and myocarditis, coupled with an observational study of cardiomyopathies.
This study utilises The Heart Hive, an international, online registry of patients with self-reported clinically diagnosed cardiomyopathy or myocarditis, and people with a family history of cardiomyopathy, enrolled on an on-going basis. Registry participants are invited to enter self-reported demographics and health data relevant to their cardiac diagnosis into The Heart Hive online database.
Registry participants with self-reported clinically diagnosed cardiomyopathy will be recruited to an observational, prospective study entailing collection of patient-reported baseline demographic data and clinical risk factors, genotyping, and annual collection of follow up data from patients, national registries (NHS England) and medical records.
In the pilot phase 100 DCM and 100 HCM patients will be recruited to a validation study. Consent will be sought to access medical information from health care providers in order to compare against and confirm self-reported health information. DNA will be obtained from saliva samples and tested in-house using a panel of clinically validated known Mendelian DCM and HCM genes as a second validation of the accuracy of self-reported diagnosis and to confirm equivalent genetic architecture of DCM and HCM in direct-to-patient recruited cohorts compared to traditional centre of excellence clinic-based recruitments.
Following validation of the approach and once funding is in place for genomic studies, larger numbers of cardiomyopathy patients will be recruited to this study from the registry of research willing participants.
174 studies on the registry are indexed under Myocarditis; 75 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 208 across 120 observational studies indexed under Myocarditis.
Browse Myocarditis studies →Imperial College London is the lead sponsor of 843 studies on the registry; 180 are open to participants now.
Of its 9 completed or terminated interventional studies of FDA-regulated products, 6 (67%) have results posted.
Compared within Myocarditis, this study's primary condition as ClinicalTrials.gg classifies it; the registry's first condition term is Cardiomyopathies. The counts are of registry records indexed under each term, refreshed daily. How we classify →
Eligible adult patients with cardiomyopathy in The Heart Hive registry
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Note: Pregnant women are eligible. This study is observational and entirely separate from clinical care.
Exclusion criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Genetic analysis of DNA extracted from saliva. Participants can opt in to receive individual results of research genetic analysis for a predefined panel of clinically actionable cardiomyopathy genes.
Number of participants with cardiovascular cause of death
Cardiovascular death
Time frame: 90 years
Number of participants with arrhythmic events
(ventricular fibrillation, unstable sustained ventricular tachycardia, appropriate implantable cardioverter-defibrillator delivered shock, and aborted sudden cardiac death
Time frame: 90 years
Number of participants with major heart failure events
heart transplantation, left ventricular assist device implantation, unplanned heart failure, hospitalisation
Time frame: 90 years
Plan to share: Undecided — Candidate variants and/or genes, de-identified sequencing data, as well as de-identified high level clinical information may be shared with other clinical laboratories and researchers through databases for the purpose of improving our understanding of the relationship between genetic changes and clinical symptoms. Examples of these types of databases are dbGAP, MatchMaker Exchange, and ClinVar.
No publications or documents are linked to this record.
Started Nov 2019 (actual). Primary completion is estimated for Oct 2026, 82 months after the start.
Of 70 non-industry observational studies under Myocarditis, half reached primary completion within 69 months of starting (the median), counting those still running; a quarter within 20 and three quarters within 251. This study's planned 82 months is above that.
Counting every sponsor, half of 71 studies reached it within 69 months; a quarter within 20 and three quarters within 251.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
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