Actively Recruiting
Multicentre Hypertrophic Cardiomyopathy Registry Collecting Longitudinal Health Data Across UK NHS Hospitals
Led by University of Manchester · Updated on 2026-05-01
2500
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Hypertrophic cardiomyopathy (HCM) is a common inherited heart condition that causes thickening of the heart muscle, leading to potential blood flow blockages, shortness of breath, and risks of heart failure or sudden cardiac arrest. Researchers are collecting detailed health information from HCM patients across multiple NHS hospital sites in the UK to better understand the disease and how different treatments work for individuals. This observational registry aims to improve risk prediction and support more personalized treatment plans for people living with HCM. The study involves enrolling about 2,500 adults diagnosed with HCM over five years. Participants' routine clinical data will be collected during their regular medical visits, including heart scans (echocardiograms and MRI), blood tests, genetic information, medications, and device status if applicable. All care decisions remain with the treating doctors, and participants' data are securely stored with unique study IDs to protect their identity. Participants will be involved over several years with ongoing data collection during their usual clinical appointments. Researchers will monitor changes in key heart function measures, the occurrence of significant heart rhythm problems, and relationships between genetics, imaging results, and clinical outcomes. The study's primary outcome focuses on changes in left ventricular outflow tract gradient over 3 to 5 years, helping to advance knowledge about HCM progression and treatment responses.
CONDITIONS
Brief Title
Multicentre Hypertrophic Cardiomyopathy Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults aged 18 to 99 years
- Confirmed diagnosis of hypertrophic cardiomyopathy (HCM) not explained by abnormal loading conditions such as significant hypertension or valvular disease
You will not qualify if you...
- Participants who do not meet the imaging and clinical diagnostic criteria for hypertrophic cardiomyopathy (HCM)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 5 years
Participants who undergo routine care are observed with data collected during regular clinical visits including demographics, comorbidities, medications, ECG, biomarkers, echocardiography, CMR imaging, and device status if available.
Visits occur during routine clinical care as determined by treating physicians
Trial Site Locations
Total: 1 location
1
University of Manchester
Manchester, United Kingdom, M23 9LT
Actively Recruiting
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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