Longitudinal study follows multisystem inflammatory syndrome in children (MIS-C)

Madilyn Dayton, a 12-year-old athlete from Wyoming, smiles for a sports photo as she holds a baseball bat.

As cases of the novel coronavirus (COVID-19) increase, incidents of a rare immune response to the virus have emerged. Multisystem inflammatory syndrome in children (MIS-C), often marked by shock, fever, and multi-organ inflammation, is an extreme immune response to COVID-19. MIS-C has occurred in 2 out of 100,000 children, or less than .01% of the population. 

An observational five-year study, supported by the National Institutes of Health and National Heart, Lung, and Blood Institute (NHLBI), will follow up to 600 children with MIS-C throughout 2025. Known as the “Long-TerM OUtcomes after the Multisystem Inflammatory Syndrome In Children: MUSIC” study, physicians will document symptoms as children are diagnosed with MIS-C and during follow-up visits. Researchers will use this information to study the condition and develop evidence-based treatment guidelines.

More than 29 children’s hospitals and academic medical centers that participate in the Pediatric Heart Network, a research consortium created by NHLBI, will serve as study locations.

“I woke up and I had a really bad headache and just body aches all over,” said Madilyn Dayton, a 12-year-old who shared her experience with MIS-C at a virtual news conference hosted by Primary Children’s Hospital in Salt Lake City, a participating study site. “Two to three days later I couldn’t walk and I wouldn’t eat. Then, I started getting rashes all over my body. That’s when I knew it wasn’t normal sickness. And then I woke up and I couldn’t move at all.” Madilyn, like most children with MIS-C, recovered but required intensive care until the infection passed. 

“There are no known risk factors at this point that would make some kids with COVID-19 develop MIS-C compared to those who would not,” said Dongngan Truong, M.D., M.S., a pediatric cardiologist at Primary Children’s and a MUSIC study co-chair. “That’s where (these) research studies are going to play an important role.”

This article was first published on Nov. 25, 2020. It was updated on Feb. 16, 2021. 

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