UK multicentre hypertrophic cardiomyopathy registry
Official title: Multicentre Hypertrophic Cardiomyopathy Registry
Run by University of Manchester · NCT07381894 · Data updated 2026-11-12
This project collects health information from adults with hypertrophic cardiomyopathy across UK NHS hospitals to see which treatments and tests work best for different patients.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 99 Years |
| Sex | All |
| Enrollment | 2500 (estimated) |
| Sponsor | University of Manchester Academic / other |
| Locations | 1 site (Manchester) |
| Status | Recruiting |
| Started | April 1, 2026 |
| Main results expected | January 1, 2029 |
| Study ends | January 1, 2029 |
| Registry record updated | May 1, 2026 |
| Trial ID | NCT07381894 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Adults (18+) with a definite clinical diagnosis of HCM not explained by abnormal loading conditions who receive care at participating UK NHS centres are the intended participants.
✕Probably not a fit
People without a confirmed HCM diagnosis, children under 18, or patients who do not attend participating NHS centres are unlikely to benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
The National HCM Registry is a prospective, multicentre observational programme enrolling about 2,500 adults with clinically confirmed HCM across NHS hospitals over a 5-year period. It captures routine clinical data including demographics, medications, 12-lead ECGs, echocardiography, cardiac MRI, blood biomarkers, genetic results, and device status during standard clinic visits. Data are pseudonymized and stored in a secure central database with longitudinal follow-up while clinical care remains with the treating teams. Planned analyses include natural history and treatment pattern descriptions, outcomes related to arrhythmias and heart failure, and genotype–phenotype and biomarker–imaging correlations.
Why it matters
Potential benefit: If successful, the registry could help doctors tailor treatments, predict risks like arrhythmias or heart failure, and improve long-term outcomes for people with HCM.
How similar studies have gone: Previous national and international HCM registries have produced useful outcome and genotype–phenotype data, though large UK-wide prospective datasets that capture contemporary cardiac myosin inhibitor use are relatively limited.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Confirmed diagnosis of Hypertrophic Cardiomyopathy (HCM) clinically and not solely explained by abnormal loading conditions (e.g., significant hypertension, valvular disease Exclusion Criteria: * Participants who do not fulfil the imaging and clinical diagnostic criteria of HCM
Where it's running
-
University of Manchester
Manchester, United Kingdom Recruiting
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
Transitioning from mavacamten to aficamten in obstructive HCM
This study tests whether switching from mavacamten to aficamten is feasible and safe for people with obstructive hypertrophic cardiomyopathy who are already on mavacamten.
-
68Ga-NI-FAPI-04 PET/CT imaging to detect fibroblast activation in cancer, fibrotic, and heart diseases
This test will see if an injected PET tracer called 68Ga-NI-FAPI-04 can better show fibroblast activation in people with tumors, pulmonary fibrosis, certain autoimmune vascular diseases, hypertrophic cardiomyopathy, or other cardiovascular conditions.
-
Understanding why AF happens and is harder to treat in hypertrophic cardiomyopathy
We’re testing how heart electrical signals and advanced imaging relate to atrial fibrillation in people with hypertrophic cardiomyopathy to see if treatments can be improved.
-
Multimodal analysis of heart biopsy samples
This project will take one extra small heart biopsy during a clinically needed procedure to test whether detailed molecular and immune analyses can find disease-specific signatures in adults with cardiomyopathies, myocarditis, cardiac amyloidosis, or after heart transplant.
-
T1 mapping to characterize heart tissue in common heart diseases
This project tests whether T1 mapping MRI scans, including dye-free native T1, can define normal and disease-specific heart tissue values for adults with various heart conditions.
-
Natural history of RASopathy-associated cardiomyopathy in infants and children
This project collects clinical and genetic records from infants and children with genetically confirmed RASopathy-associated hypertrophic cardiomyopathy to create a comparison dataset for future treatments.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.