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Primary Children’s Hospital Co-Leading Nation’s first long term study on COVID-19 related disorder

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Doctors at Intermountain Primary Children’s Hospital are seeing several young patients with multisystem inflammatory syndrome in children, or MIS-C – a severe complication from COVID-19.  

Now, a pediatric cardiologist there is co-leading the nation’s first longitudinal study to understand how MIS-C is affecting children long-term, and find the best way to detect and treat children with MIS-C.  

Dr. Dongngan Truong, of University of Utah Health and Intermountain Primary Children’s Hospital, is co-leading the Long-Term Outcomes after the Multisystem Inflammatory Syndrome In Children or MUSIC study. 

The five-year longitudinal study is funded by the National, Heart, Lung, and Blood Institute and is co-led by Dr. Jane Newburger of Boston Children’s Hospital. 

MIS-C is a rare, extreme immune response to COVID-19, and can cause severe illness involving the heart, lungs, blood, kidneys, or brain. Children with MIS-C are hospitalized, and often require intensive care. MIS-C also has disproportionately affected Black and Latinx children. 

“There are no known risk factors at this point that would make some kids with COVID-19 develop MIS-C and others not,” Dr. Truong said. “That’s where research studies like MUSIC are going to play an important role.” 

This MUSIC study is the first to examine how MIS-C affects the coronary anatomy and ventricular function of the heart over time, as well as the long-term effect of MIS-C on other organ systems such as the nervous, lung, immune, and gastrointestinal systems. Understanding these effects will help researchers better understand the disease, and more quickly detect, treat and manage MIS-C.    

One of the Primary Children’s participants is 12-year-old Madilyn Dayton of Wyoming. In October 2020, Madilyn had been experiencing unexplained rashes, headaches, and loss of appetite. One day, she woke up and discovered she couldn’t move without pain and called for her mother.  

Marilyn Dayton drove her daughter to Primary Children’s Hospital in Salt Lake City. She initially thought Madilyn was severely dehydrated. “I never had any idea about what was about to happen and how serious and fast this started,” she said. 

At the hospital, Madilyn, a young athlete who had never experienced COVID-19 symptoms, was found to have COVID-19 antibodies. She was diagnosed with MIS-C.  

After six days of intensive treatment, Madilyn was able to go home. But she still tires easily, has had to stay home from school, and cannot participate in basketball, volleyball, or strenuous activities for up to six months. 

Madilyn’s mother says participating in the MUSIC study is the family’s way of giving back and helping others. 

“We want to help the doctors and researchers figure out what this is, why it’s causing these problems in children, and what in the future we can do to stop it,” Marilyn said. 

Researchers say Madilyn’s participation in the study will help give them critical information to do just that.  

“We’ll analyze numerous factors from changes in a child’s heart function and rhythm to lingering symptoms like fatigue, and share data, like genetic clues about disease risk and outcomes, while using all of this information to create evidence-based treatment guidelines for MIS-C,” said Gail Pearson, MD, ScD, the associate director of the Division of Cardiovascular Sciences at the National Heart, Lung, and Blood Institute. 

The study is enrolling about 600 children from the United States and Canada through collaboration with the Pediatric Heart Network, a pediatric research consortium created and funded by the National Heart, Lung, and Blood Institute, part of the National Institutes of Health.  

Study participants are children who have been diagnosed with MIS-C and recovered, and children who will develop MIS-C over the next two years. The longitudinal study of kids’ outcomes will take place over the next five years.  

“This study could provide pediatricians and others with timely information to help them identify and react to children with MIS-C symptoms,” said Julie Miller, staff vice president of clinical research and principal investigator of the Pediatric Heart Network at HealthCore, the coordinating center for the MUSIC study. 

The MUSIC study will be conducted at more than 30 academic institutions across the United States and Canada. It’s part of a comprehensive Department of Health and Human Services and NIH strategy to understand MIS-C and pediatric COVID-19 as quickly as possible.   

For more information you can visit the Intermountain Healthcare website.

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