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  • Posted Wednesday September 15, 2021

TGen Joins Nationwide Study of Long COVID-19 Effects in Children and Young Adults

Mobile labs developed to bring science to the people in an effort to increase participation

PHOENIX, Ariz. — Sept. 15, 2021 — With more than 30% of new COVID-19 cases occurring in children and young adults, understanding the long-term impact of this illness on their health, development, and well-being is critical. 

A team of interdisciplinary researchers at the Translational Genomics Research Institute (TGen), Rhode Island’s Hasbro Children’s Hospital, NYU Langone Health, Virginia Commonwealth University, and Northeastern University will play an integral role in a $470 million NIH Researching COVID to Enhance Recovery (RECOVER) Initiative announced today to study the impacts of long COVID.

TGen will participate in a part of the study specifically involving infants, children, adolescents and young adults through age 25. Long COVID has potentially long-term consequences on physical and mental abilities, but is poorly understood.

As part of this nation-wide study, TGen, an affiliate of City of Hope, will leverage its MindCrowd project, led by Dr. Matthew Huentelman, a Professor in TGen’s Neurogenomics Division and head of the TGen’s Neurobehavioral Research Unit, to help recruit families with infants, children, adolescents and young adults with and without long COVID. MindCrowd is a 10-minute online memory test designed to better understand how the brain ages and develop guidelines for individualized precision aging. To date, more than 225,000 individuals have participated. Dr. Huentelman will also participate in the development and launch of specialized mobile laboratories in an effort to increase research participation by adding a level of convenience not found in the majority of studies.

“I’m excited to bring the MindCrowd project and the lessons we’ve learned about recruitment over the past eight years to this important study,” said Dr. Huentelman. “Our study team believes that by visiting the cities, towns and neighborhoods of our country will not only enhance participation, but will also lead to a greater understanding of how science and medicine are benefitting society.”

Dr. Huentelman joins Dr. Sean Deoni, an Associate Professor of Diagnostic Imaging and Pediatrics at the Warren Alpert Medical School of Brown University, Dr. Moriah Thomason at NYU Langone Health, Drs. Amy Salisbury and Patricia Kinser at Virginia Commonwealth University (VCU), and Dr. Laurel Gabard-Durnam at Northeastern University. Together, they will lead the LEGACI study, with specific focus on individuals age 25 and under.

“While children and young adults 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,” says Sean Deoni. Preliminary work from Dr. Thomason’s group at NYU Langone suggests that up to 14% of children who had COVID-19 illness continue to suffer from lingering symptoms. Thomason says, “We need to understand what children infected with COVID-19 are experiencing and need to identify factors that predict better or worse outcomes. These 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,” says Dr. Salisbury of VCU. “Unfortunately, these are also families that have traditionally been excluded from research,” adds 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,” says 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,” says Dr. Gabard-Durnam of Northeastern.

LEGACI is short for Life-course Examination of Genomics, Affect and neurocognitive Changes following COVID-19 Infection.

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, adolescents, and young adults 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 Sean 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 

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About TGen, an affiliate of City of Hope
Translational Genomics Research Institute (TGen) is a Phoenix, Arizona-based nonprofit organization dedicated to conducting groundbreaking research with life-changing results. TGen is affiliated with City of Hope, a world-renowned independent research and treatment center for cancer, diabetes and other life-threatening diseases:  This precision medicine affiliation enables both institutes to complement each other in research and patient care, with City of Hope providing a significant clinical setting to advance scientific discoveries made by TGen. TGen is focused on helping patients with neurological disorders, cancer, diabetes and infectious diseases through cutting-edge translational research (the process of rapidly moving research toward patient benefit). TGen physicians and scientists work to unravel the genetic components of both common and complex rare diseases in adults and children. Working with collaborators in the scientific and medical communities worldwide, TGen makes a substantial contribution to help our patients through efficiency and effectiveness of the translational process. For more information, visit: Follow TGen on FacebookLinkedIn and Twitter @TGen 

Media Contact:
Steve Yozwiak
TGen Senior Science Writer
[email protected]

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