FAQ for Participants

The term “heart failure” means that your heart is not pumping and/or relaxing as it should be. As a result, your body is not getting enough of the oxygen-rich blood it needs to function properly. This causes less blood to go to tissues and organs such as your brain, liver and kidneys.

Heart failure is not a sudden condition like a heart attack. It does not mean your heart has stopped beating. The muscles in your heart wall have slowly become weaker. This develops over a period of weeks or months.

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HFpEF (pronounced “huff-puff”) is a type of heart disease that causes shortness of breath, fatigue, exercise intolerance, and fluid retention in the legs and/or abdomen. It is one of the main forms of heart failure, and is very common, especially in older adults. In patients with HFpEF, the heart squeezes normally but it is stiffer than normal and cannot relax. Because the heart muscle is stiff, it cannot properly fill with blood, leading to a backup of blood into the lungs and not enough blood being pumped to the rest of the body. Patients with HFpEF are at risk for hospitalizations for heart failure and other complications if it is not diagnosed and treated adequately. This is why it is very important for you to be in close contact with your cardiologist, and for you to follow-up in clinic regularly.

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Clinical research teaches us about the therapies we prescribe and the medicines we use. Clinical research involves studying people with an overall goal to gain a better understanding on their health. Some studies focus on a new medicine or treatment of focus. Other research studies do not involve any treatment and instead use surveys and questionnaires to collect information about a health topic. Clinical research has taught us most of what we know about the medicines and therapies we use in healthcare today.

  • If you are a participant in the Deep Phenotyping group of this study, you will receive a comprehensive assessment of your health.
  • You might find it rewarding to contribute to scientific discoveries about heart failure
  • You might help researchers better understand heart failure and how to better treat those with heart failure.

This study is not intended to provide medical care or interfere with your relationship with your own health care provider. If you do not have your own health care provider, you can be referred to one if you would like.

If you participate in the deep phenotyping group, we expect that you will be in this research study for 5-7 hours per day for two days for the baseline examination with follow-up in-person visits occurring annually lasting up to 5 years. You also will be contacted by phone or via an online survey in the Eureka app about periodically to ask you about your health since the last contact.

In the deep phenotyping protocol, the examination will include measurements of your height, weight, waist, hips, blood pressure, and pulse; interview of your health; collection of blood, urine, and stool sample; walking test; electrocardiogram (“EKG”); echocardiogram (ultrasound of the heart and blood vessels); cardiopulmonary exercise test; peripheral arterial tonometry; and arterial stiffness applanation tonometry measurement. The examination will also include CT (“CAT scan”) of the chest, abdomen, and thigh; MRI of the heart and liver; and a lung function test. We will also include an optional assessment of fat and muscle tissue with a small biopsy.

More detailed information about the study procedures can be found under Study Participant Overview & Protocols.

You will receive results from some tests at no cost to you or your insurance provider. (These tests, like the entire study, are paid for by the National Institutes of Health). Information from the tests will be given to you and your health care provider, if you want. However, please keep in mind that these tests are being performed for research purposes and not to diagnose any specific medical conditions. Also, HeartShare is not intended to provide medical care or interfere with your relationship with your own health care provider. If you do not have your own health care provider, you can be referred to one if you would like.

A research team member will explain the study in detail to you before you decide to participate. The researcher will carefully review the purpose of the study, what you will be asked to do in the study, and the possible risks and benefits of participating. You can take as much time as you need to ask questions and get more information from the study team, your healthcare providers, and loved ones. If you decide to participate, you will sign the informed consent form.

Participating in the study is completely voluntary. You can decide not to participate at any time.

Please contact us if you are interested in learning more about control studies currently available.

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Visit the Clinical Centers page to find which location is closest to you.

To learn if you are still eligible for this research study, please contact us.