PROVIDENCE — Hasbro Children’s Hospital is joining a nationwide study to research the long-term effects that COVID-19 infection has on children.
With more than 30 percent of new COVID-19 cases occurring among children in the US, many of whom have not been eligible to receive a vaccine, researchers across the country are setting out to understand the long-term impact of the virus and its impact on children’s health, development and well-being.
The team of researchers span across various hospitals, including Hasbro Children’s, New York University’s Langone Health, Virginia Commonwealth University, Northeastern University, and the Translational Genomics Research Institute. The study is being funded through the $470 million National Institutes of Health’s Researching COVID to Enhance Recovery initiative, also known as RECOVER, to study the impact of “long COVID” on infants, children, and adolescents.
Hasbro Children’s will receive about $40 million from the NIH to lead the study in Rhode Island, and surrounding region.
Dr. Sean Deoni, a professor of diagnostic imaging and pediatrics at the Warren Alpert Medical School of Brown University, is heading the research in Rhode Island, which will lead the LEGACI (Life-Course Examination of Genomics and Neurocognitive Changes Following COVID-19 Infection) study with a specific focus on individuals under the age of 25.
“While children appear to be resilient against COVID-19, and are much less likely to have severe illness or death, we don’t know how COVID-19 affects their long-term health and development, and it’s something we need to answer quickly,” said Deoni.
Deoni said the study is looking to recruit about 1,200 individuals across three sites, with “about 400 to 500″ pediatric patients at Hasbro Children’s. He said that number includes healthy children who do not have COVID-19, children who currently have acute symptoms, children who had COVID-19 within the last 18 months but didn’t have prolonged symptoms, and pediatric patients who had COVID-19 within the last 18 months with prolonged symptoms.
“We’re really looking across the whole spectrum to really understand the impact of these different aspects,” he said. “With the Delta [variant], obviously, there’s a lot of particularly hitting children as they’ve gone back to school.”
The goal is to finish recruiting patients within the next eight to 12 months, and the study will last up to four years, depending on when those individuals come in and the severity of their symptoms. Families interested in enrolling can expect a “tiered assessment schedule,” where the first tier is fully remote that will go into general demographic questions.
It will use mobile health technologies, such as smartphone apps and wearable devices to gather data; and characterize the incidence and prevalence of long-term effects, which will include the range of symptoms, underlying causes, risk factors, and outcomes.
The second tier of the study, for families, will be more involved, and include antibody and antigen testing. Children will play cognitive games, and then doctors will check the children’s heart rate, blood pressure, and neuro-imaging. Biological samples are also taken, such as spit, hair, and blood. Patients in the study may also undergo optional activities like measuring physical responses while running on a treadmill.
Deoni told the Globe that this study is ideal for Rhode Island as it has “one of the highest” COVID-19 rates among pediatric patients per capita in the nation. He said there’s been about 600 pediatric patients that have been diagnosed with active COVID-19 infection since last year.
And since researchers will be using a mobile clinic, “Rhode Island is a small state. It’s easy to get around in terms of us taking a lap to almost all areas of the state.”
“The other aspect of Rhode Island that’s attractive from a study perspective is that we do have a pretty wide swath of demographics — we have a number of both ethnicities, racial background, etc. that we can begin to look at within a pretty small radius geographically,” he said.
Preliminary research from Dr. Moriah Thomason, a population health and child and adolescent psychiatry at NYU Langone Health suggests that up to 14 percent of children who had COVID-19 will continue to suffer from lingering symptoms. The most common symptoms include pain, fatigue and “brain fog,” shortness of breath, headaches, anxiety, depression, fever, chronic cough, and problems involving sleep.
“We need to understand what children infected with COVID-19 are experiencing and need to identify factors that predict better or worse outcomes. This will help us to develop better ways to care for and counsel families,” said Thomason, who said these symptoms of long-COVID can impact a child’s ability to perform at school or take part in everyday activities and sports.
“We will build local networks of people affected by long COVID and representatives from advocacy organizations to help build links to affected families and communiques, and to quickly disseminate information back to them,” said Dr. Gabard-Durnam, a psychology professor and director of the Plasticity in Neurodevelopment (PINE) Lab at Northeastern.
The study also looks to address any potential strategies for treatment and prevention.
“This is an important opportunity to answer important questions about the impact of COVID-19 infection and Long COVID illness in children, and we will need everyone’s help,” said Deoni. “Effects of COVID could have life-long impact, so it is important to understand these effects and identify potential opportunities to minimize them.”