Information for Families

If you are interested in joining the COVID MUSIC Study, or are already participating, you may want to learn more about research.

Participating in Research

Whether you are currently participating in the COVID MUSIC Study or considering joining, you may be interested in learning more about what it means to be involved in this research study.

Why Participate?

There is no “right” or “wrong” answer about participating in research, only the answer that seems right for you and your child. If you have been invited to participate in the COVID MUSIC Study, you will receive a detailed Informed Consent/Assent form that explains all of the details in the study, including reasons for the study, procedures, benefits and risks, and privacy protections. This form describes the research and many of your questions will be answered there. When you meet with a member of the research team, you will be able to ask any questions you have about the study.

Some Questions to Ask Are:

  • How many participants will be in the study?
  • When did the study start, and how long will it last?
  • Will the study have any effect on my/my child’s daily life?
  • Is there any risk to me/my child?
  • How many extra visits will I need to make to the hospital or study site?
  • Will I be reimbursed for parking, travel expenses, meals, or childcare?
  • Who do I contact if I have questions?

What Will Happen in this Research Study?

We’ll Collect Some Data

The study team will collect information from your/your child’s routine clinical care, including laboratory test results and cardiac testing reports, such as echocardiograms (echo), electrocardiograms (ECG), and cardiac magnetic resonance imaging (MRIs).

COVID MUSIC Study Collect Information

We May Need Some Testing

Most of the information in this study will come from tests that have been ordered as part of clinical care, such as lab tests, an echo, ECG, or MRI. In some cases, you/your child may be asked to have a test done for research because that test was not a part of regular care. If you agree to a research test, it will be paid for by the study and will not be charged to you or your insurance. You do not have to agree to any testing that is not part of routine care. In other words, research tests are voluntary, and no research tests are required for you/your child to participate in this study.

COVID MUSIC Study May Need Some Testing

We’ll See You for Clinic Visits

We will gather information about you/your child at clinic visits that usually occur about 2 weeks, 6 weeks, and 6 months after hospital discharge, at the times when you will be seeing your doctor for routine care.

COVID MUSIC Study Clinic Visits

We’ll be in Touch Once a Year (for 5 years)

One year after discharge from the hospital, we will look at your/your child’s medical chart and contact you to conduct a brief medical history form. We will continue to do this once a year for up to 5 years. We’ll ask about any operations, tests or times that you/your child were in the hospital, any medicines you/your child are taking, and if you/your child have developed any health problems. These questions should take about 20 minutes to complete.

COVID MUSIC Study Contact Once a Year

There’s an Optional Opportunity….

We are trying to understand how differences in DNA (genetic make-up) can make young people susceptible to developing MIS-C or affect how sick they are. if you agree, a sample of blood or saliva will be collected from you/your child. If you/your child are unable to give blood, a sample of saliva (spit) can be given instead (blood is preferred because it is more reliable for the type of DNA testing we are performing on individuals who had MIS-C). We will also collect blood or saliva samples from biological parents for genetic research; for parents, saliva is just as good as blood for this DNA analysis. These samples from participants and their parents are optional and can be collected at any time during the study.

COVID MUSIC Study Optional DNA Testing

Common Questions

Anyone less than 21 years old can join this study if doctors believe they have had MIS-C.
Participants and parents will receive money to help with travel on visit days for research testing and to help compensate for time and effort. Most of the tests that participants undergo will be part of their routine care and not performed for research only. Optional tests that are done for research only and are not part of regular care will be provided free of charge.
Yes. Once a participant and family have joined the study, they may leave the study at any time. Your decision about being in the study will not affect any other medical care now or in the future.
This study has minimal risks. We will do everything we can to make you/your child feel comfortable, schedule visits and times to talk with you around your family schedule, and to protect your privacy.
We cannot promise that you/your child will have personal benefits to taking part in this research, other than the satisfaction of improving our knowledge about MIS-C. It is possible, however, that tests performed solely for research purposes could reveal important findings for your/your child’s care. If that happens, results will be shared with you and your doctor.
The results of the study will help researchers, parents, and patients understand important things about the long-term health outcomes after MIS-C. The results may help improve care of children, teens, and young adults with similar problems in the future.
COVID MUSIC Study Resources

Looking for Resources on MIS-C?

Information on MIS-C is being updated frequently. Check back here regularly for new resources.

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Joining the COVID MUSIC Study

If you are interested in joining the COVID MUSIC Study, the first step is to find a study site near you. You can contact the study site directly or talk to your/your child’s doctor about getting involved.

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Study Locations

Leading children’s medical centers across the United States and Canada are participating in the COVID MUSIC Study. View the map to find a location near you.

View Study Locations

COVID MUSIC Study Locations