Frequently Asked Questions

MIS-C is a rare complication of COVID-19 that develops about 2-6 weeks after having had COVID-19. While it is normal for the immune system to fight off an infection, young people with MIS-C seem to have their immune systems turned on too strongly. This can affect many organ systems, including the heart. When young people are diagnosed with MIS-C, they may have decreased heart function (meaning how the heart squeezes), enlargement of the coronary arteries (the blood vessels that bring oxygenated blood to the heart), and heart rhythm problems. However, we do not know if these problems last or go away and if there are long-term effects of MIS-C on other organ systems. For more information about MIS-C, check out our recommended Resources.

In order to join this study, participants must meet specific criteria outlined below which meet the CDC definition of MIS-C, and must sign a consent form. For some of these criteria, we will also need to look at medical record information to help us determine if someone is eligible. Contact us at [email protected] for more information.

Eligibility Criteria:

• Under the age of 21 years old.
• A fever at or greater than 38°C (100.4°F) for 24 hours or more.
• Laboratory results that show inflammation, including (but not limited to) one or more of the following: an elevated CRP, ESR, fibrinogen, procalcitonin, d-dimer, ferritin, LDH, or IL-6, elevated neutrophils, reduced lymphocytes and low albumin.
• Illness severe enough to need a hospital stay. Specific details of the hospitalization include:
• Multisystem (2 or more) organs involved, based on clinical judgment from record review, discharge diagnosis, laboratory or diagnostic tests.
• Organ system involvement includes but is not limited to cardiac, renal, respiratory, hematologic including coagulopathy, gastrointestinal including liver, dermatologic or neurological.
• A positive test for current or recent COVID (SARS-CoV-2) infection by one of the following:
• The RT-PCR Rapid Test, serology test, or antigen test or
• COVID-19 exposure within the 4 weeks prior to the onset of symptoms.

Exclusion Criteria: No other possible diagnosis that would explain symptoms, such as bacterial sepsis, murine typhus, staphylococcal or streptococcal shock syndromes.

The COVID MUSIC Study is funded by the National Heart Lung and Blood Institute and is being conducted by the Pediatric Heart Network.

The study lasts up to 5 years, with study visits coordinated with your regular, clinical care visits. These will usually occur about 2 weeks, 6 weeks, and 6 months after hospital discharge, with more clinical visits as needed depending on what your local medical team decides. As part of the study, we will gather information from participants’ medical records, reach out to participants annually until 5 years after the MIS-C diagnosis to see how participants’ are doing (if they are not being seen in clinic), and obtain a blood or saliva sample (this part of the study is optional) from participants and their parents to study differences in the genetic make-up of children and young adults with MIS-C. For more details on what will happen in the research study, click here.

Tests that are done for research that are not part of regular care will be provided free of charge. Participants and families will be compensated for time and effort.

Participants will be followed for up to 5 years after diagnosis of MIS-C

Yes. It is up to participants and their families to decide to be in the study. Once in, they may leave the study at any time. Being in the study will not affect other medical care now, or in the future.

We take confidentiality very seriously, and will ensure that your right to privacy is protected, and participation in this research study will remain confidential. No names or other identifying information will be used in any published report of information from this study.

Your child’s data will be combined with data from other study participants in a way that ensures no one can be identified. The resulting set of COVID MUSIC Study data will be integrated into BioData Catalyst, a cloud-based system developed by NHLBI that meets national standards for a high level of data security. BioData Catalyst helps get the data into the hands of scientists quickly, so that we can learn as much as possible as quickly as possible, while still protecting privacy and confidentiality of individual participants.

We plan to publish what we find out from the data periodically throughout the study, so we can share this important information with families, researchers, and health care providers. We will make participants aware of these publications through this website, and through direct communication from study sites.