With more than 30 percent of new COVID-19 cases occurring in children, understanding the long-term impact of this illness on their health, development, and well-being is critical. A team of interdisciplinary researchers at Rhode Island’s Hasbro Children’s Hospital, NYU Langone Health, Virginia Commonwealth University, Northeastern University, and the Translational Genomics Research Institute will play an integral role in the recently announced $470 million NIH Researching COVID to Enhance Recovery (RECOVER) Initiative to study the impact of Long COVID in infants, children, and adolescents - a condition that has potential long-term consequences on children’s ability to learn and play, but is poorly understood.
As part of this nation-wide study, Dr. Sean Deoni, an associate professor of diagnostic imaging and pediatrics at the Warren Alpert Medical School of Brown University, is joined by colleagues Dr. Moriah Thomason, at NYU Langone Health, Drs. Amy Salisbury and Patricia Kinser at Virginia Commonwealth University (VCU), Dr. Laurel Gabard-Durnam at Northeastern University, and Dr. Matt Huentelman at Arizona’s Translational Genomics Research Institute (TGen). Together, they will lead the LEGACI study, with specific focus on individuals under age 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 Dr. Deoni. Preliminary work from Dr. Thomason’s group at NYU Langone suggests that up to 14 percent of children who had COVID-19 illness continue to suffer from lingering symptoms. Thomason said, “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.” The most common symptoms include pain, headaches, fatigue, “brain fog,” shortness of breath, anxiety, depression, fever, chronic cough, and sleep problems. These symptoms can impact a child’s ability to perform at school or take part in everyday activities and sports.
While COVID-19 has affected almost every family, “We have learned that minority families have been particularly affected,” said Dr. Salisbury of VCU. “Unfortunately, these are also families that have traditionally been excluded from research,” added Dr. Kinser of VCU. To address this, the team will use a series of mobile laboratories, complete with neuroimaging facilities, to bring the research to involved families. “Families want to participate in this research, but they often are unable to take time away from work, school, or other responsibilities to come into a hospital or university research lab,” said Dr. Huentelman, an expert in population genomics who has built a US-wide virtual study cohort using online testing and social media. In addition, “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 of Northeastern.
Together with the larger RECOVER initiative, the LEGACI study will add to the unique multidisciplinary research community inclusive of diverse research participants that are critical to informing the treatment and prevention of the long-term effects of COVID-19. Specifically, the LEGACI will:
- Enroll patients during the acute as well as post-acute phases of the SARS-CoV-2 infection;
- Use mobile health technologies, such as smartphone apps and wearable devices, which will gather real-world data in real time;
- Characterize the incidence and prevalence of long-term effects from SARS- CoV-2 infection in infants children, and adolescents, including the range of symptoms, underlying causes, risk factors, and outcomes;
- Address 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 Dr. Deoni. “Effects of COVID could have life-long impact, so it is important to understand these effects and identify potential opportunities to minimize them.”
Families with children affected by COVID-19 who are interested in participating can learn more at www.legacistudy.org.