Active not recruitingOBSERVATIONAL

HCMR - Novel Markers of Prognosis in Hypertrophic Cardiomyopathy

This study, called HCMR, aims to find new and better ways to understand hypertrophic cardiomyopathy (HCM). HCM is a heart condition where the heart muscle becomes unusually thick. While many people with HCM live normal lives, some are at risk of serious problems like sudden cardiac arrest or progressing to heart failure. Currently, it's hard to predict who might be most at risk, making it difficult to offer the right treatments early. This study will use detailed heart scans (CMR), genetic tests, and blood tests to look for new signs that could help doctors predict a person's future health more accurately. The goal is to develop a tool to identify higher-risk patients, which could lead to better tailored treatments and improve people's lives.

At a glance

Status

Active not recruiting

Sponsor

University of Virginia

Enrolment target

2,750

Start

01 Apr 2014

Estimated completion

01 Jun 2025

Hypertrophic Cardiomyopathy

What is this study about?

Hypertrophic cardiomyopathy (HCM) is a common heart condition where the heart's walls become thicker than they should. For many years, doctors have been looking for ways to better understand why some people with HCM remain well, while others face serious issues like sudden cardiac arrest (when the heart suddenly stops beating effectively) or heart failure (when the heart can't pump enough blood). Predicting who is at risk is currently quite difficult.

This study, called HCMR, wants to improve how we identify and understand these risks. It's an 'observational study,' which means no new treatments are being tested; instead, researchers are carefully watching and collecting information from people with HCM. They will use advanced heart scans called Cardiovascular Magnetic Resonance (CMR), which give very detailed pictures of the heart. They will also look at genetic information and blood samples to see if there are any new clues that can help predict how HCM might develop in different people.

The main aim is to build a clearer picture of HCM by linking these different pieces of information – what the heart looks like on scans, genetic makeup, and blood test results – to how people's health changes over time. By doing this, the researchers hope to create a tool or model that can help doctors better understand a person's individual risk. This improved understanding could then help guide future research into new treatments and ensure that people with HCM receive the most effective care for their specific needs, reducing the chances of serious complications.

Key takeaways

Understanding HCM better is key to better care.
This study uses advanced heart scans, genetic, and blood tests.
It aims to build a tool to better predict future risks in HCM.
Participation involves observation, not new treatments.
The goal is to help doctors tailor treatments more effectively.
Results could lead to improved clinical trials for HCM.

Who may be eligible?

To take part in this study, you need to be an adult between 18 and 65 years old and have a confirmed diagnosis of hypertrophic cardiomyopathy (HCM). This means your heart muscle is thicker than normal without an obvious reason, and you haven't had previous surgeries or procedures to thin the heart wall.

There are certain reasons why you might not be able to join. For example, if you've already had a heart attack, experience constant serious irregular heartbeats, or have certain medical conditions like severe kidney disease or diabetes with organ damage. Also, if you have a pacemaker, some types of metal in your body (like certain aneurysm clips or eye implants), or severe claustrophobia that would prevent you from having an MRI scan, you would unfortunately not be able to participate.

Lastly, if you are pregnant or unable to give your consent (permission) to join the study, you would also be excluded. The study team will discuss all these points with you carefully.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you between 18 and 65 years old?
Do you have a confirmed diagnosis of hypertrophic cardiomyopathy (HCM)?
Have you *not* had heart surgery or procedures to thin your heart muscle?
Do you *not* have a pacemaker or specific metal implants that would prevent an MRI scan?
Are you *not* pregnant?
Do you *not* have severe kidney disease or uncontrolled diabetes with organ damage?

Answer every question to see your result.

What does participation involve?

As this is an observational study, taking part mainly involves sharing your existing medical information and undergoing some specific tests. You won't be given any new treatments or medications as part of the study. You would likely have detailed heart scans (Cardiovascular Magnetic Resonance or CMR), provide blood samples, and have your genetic information looked at. The study team will gather your demographic and clinical information, which includes details about your health and medical history. The total duration of your involvement isn't specified here, but it's important to understand this will be a process of observation and data collection.

Potential risks and benefits

The potential benefits of taking part include contributing to a better understanding of hypertrophic cardiomyopathy, which could lead to improved diagnosis and treatment for future patients. While there are no direct personal medical benefits specified, your participation helps advance medical knowledge. Potential risks might include those associated primarily with the CMR scan (e.g., claustrophobia, reactions to contrast dye if used, though rare). There are also minimal risks associated with blood draws (e.g., bruising). You have the right to withdraw from the study at any time without affecting your medical care.

Locations (44)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Yale University
Verified postcode
New Haven, United States
Northwestern University Feinberg School of Medicine
Verified postcode
Chicago, United States
Johns Hopkins University
Verified postcode
Baltimore, United States
Tufts Medical Center
Verified postcode
Boston, United States
Brigham & Women's Hospital
Verified postcode
Boston, United States
Beth Israel Deaconess Medical Center
Verified postcode
Boston, United States
University of Michigan Health System
Verified postcode
Ann Arbor, United States
Mayo Clinic
Verified postcode
Rochester, United States
NYU Medical Center
Verified postcode
New York, United States
St. Luke's Roosevelt University Hospital of Columbia University
Verified postcode
New York, United States
Weill Cornell - New York Presbyterian
Verified postcode
New York, United States
Duke University Medical Center
Verified postcode
Durham, United States

Common questions

What is hypertrophic cardiomyopathy (HCM)?

HCM is a heart condition where the heart muscle, especially the main pumping chamber, becomes unusually thick without a clear reason, like high blood pressure.

What does 'observational study' mean?

It means researchers will observe and collect information about your condition and health over time, without giving you any new treatments or medicines as part of the study.

What is a CMR scan?

CMR stands for Cardiovascular Magnetic Resonance. It's a special type of scan that uses strong magnets and radio waves to create very detailed pictures of your heart and blood vessels.

Will I get any medication or treatment in this study?

No, this study is about observation and understanding, not about testing new medications or treatments. You will continue to receive care from your own doctors.

Why is genetic information part of the study?

Researchers want to see if there's a link between your genetic makeup and how HCM affects your heart, as well as how it might progress over time.