Multicentre Hypertrophic Cardiomyopathy Registry
This important UK study is building a national register for people with Hypertrophic Cardiomyopathy (HCM). HCM is a heart condition where the heart muscle thickens, affecting about 1 in 500 people. While treatments exist, doctors need more information to predict which ones will work best for each individual. Over several years, the study will securely collect routine health details — like heart scans, blood tests, and genetic information — from patient medical records at various NHS hospitals. The main goal is to improve our understanding of HCM and help doctors create more tailored and effective treatment plans for patients in the future.
At a glance
What is this study about?
Hypertrophic Cardiomyopathy, usually called HCM, is a common condition that you can inherit, meaning it runs in families. It affects about 1 in every 500 people. In HCM, the heart muscle becomes thicker than it should be. This thickening can sometimes make it harder for blood to flow out of the heart, leading to symptoms like feeling short of breath, and it can also increase the risk of serious heart problems or even sudden cardiac arrest.
Even though there are standard ways to treat HCM, and some newer medications have recently become available, doctors still need more information to figure out which treatments will be most effective for each person. This study is like putting together a big, secure puzzle of health information for HCM patients across the UK. By collecting details from many NHS hospitals over several years, researchers want to see how the condition progresses and how people respond to different treatments.
The main aim of this national registry is to create a clearer picture of HCM in the UK. By carefully looking at information from routine heart scans, blood tests, and even genetic details, we hope to improve our understanding of the condition itself. This knowledge will help doctors better predict what might happen in the future for someone with HCM and, most importantly, lead to more personalised and effective treatment plans for patients affected by the condition.
Key takeaways
- It's a UK study collecting routine health information on people with Hypertrophic Cardiomyopathy (HCM).
- No extra tests or appointments are needed; data comes from your usual medical records.
- The goal is to understand HCM better and improve future treatments for patients.
- Your medical care and treatment decisions remain entirely with your doctor.
- Your information will be kept safe and confidential using a special code.
- Participation helps future patients with HCM by advancing medical knowledge.
Who may be eligible?
To be able to take part in this study, you need to be an adult, aged between 18 and 99 years old. You must have a clear medical diagnosis of Hypertrophic Cardiomyopathy (HCM). This diagnosis should be confirmed by your doctor and not explained by other health issues like very high blood pressure or problems with your heart valves.
If your doctors are unsure if you have HCM, or if another condition fully explains your heart's thickening, then this study might not be suitable for you.
Ultimately, your doctors will be able to confirm whether your specific medical situation meets the criteria for being included in this register.
- Are you 18 years old or older?
- Do you have a confirmed diagnosis of Hypertrophic Cardiomyopathy (HCM)?
- Has your doctor confirmed that your HCM is not solely due to other conditions like very high blood pressure?
- Are you happy for your routine medical information to be used for research?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
Taking part in this study is quite straightforward because it primarily involves collecting information that your doctors already record during your routine check-ups and medical care. You won't have any extra hospital visits or need to take any new medications specifically for the study.
The research team will securely gather details from your existing medical records. This includes information from your heart scans (like echocardiograms and MRIs), results from your blood tests, and any genetic information related to your HCM. They will also look at demographic details (like your age and gender), other health conditions you might have, and any medicines you are taking.
This information will be collected over several years, as part of your ongoing care. Importantly, your doctors will continue to make all decisions about your treatment and care, as usual. The study simply observes and records how you are doing over time without changing your medical management.
Potential risks and benefits
Locations (1)
- University of ManchesterManchester, United Kingdom· Recruiting
Common questions
What is Hypertrophic Cardiomyopathy (HCM)?
HCM is a heart condition where the heart muscle thickens. It can be inherited and may affect how blood flows through the heart, potentially causing symptoms like shortness of breath.
Will I have to take new medicines for this study?
No, you won't be asked to take any new or different medicines specifically for this study. Your medical treatment will continue as decided by your own doctor.
Will I have extra hospital appointments?
No, you will not have any extra hospital appointments or tests because of this study. It uses information from your regular medical check-ups.
How will my personal information be kept safe?
Your health information will be stored securely in a database, and your identity will be protected using a special code instead of your name.
How will this study help patients?
By gathering information from many patients, researchers hope to better understand HCM, predict who might get certain symptoms, and develop more personalised and effective treatments for everyone with HCM in the future.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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