With new registry, St. Jude tracks COVID-19 in childhood cancer patients around the world

For children with cancer across the world, disruptions to the healthcare systems due to COVID-19 could have long-lasting and varying effects on their access to care.

To learn more about the disruptions and develop solutions to manage them, St. Jude Children’s Research Hospital in Memphis has developed a global registry. Born from an internationally attended conference at St. Jude in early March, the registry also maps cases of COVID-19 among childhood cancer patients across the world. 

The main purpose of the registry is threefold, said Carlos Rodriguez-Galindo, director of St. Jude Global. Found online, the registry tracks COVID-19 in patients with childhood cancer, has created educational resources “where there were none” and has become a hub for caregivers worldwide to discuss new developments. 

Disruptions to care are possible for children from all countries, but particularly for those who are live in under-resourced countries, doctors said. Part of St. Jude Global's mission is to improve childhood cancer care "in every corner of the world."

Early on, St. Jude doctors realized the registry wouldn’t just be about creating documents. 

“This probably requires much more than that,” Rodriguez-Galindo remembers thinking at the time. “This (COVID-19) is a new disease, and it is disrupting the systems, disrupting access to care. It would be a major catastrophe for children with cancer — not just because the children with cancer would be more susceptible, but because probably the services, the systems were completely destroyed.” 

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In early March, infectious disease experts from around the world gathered for an annual leadership symposium at St. Jude. This was the last group to enter the campus before it closed to visitors, said Miguela Caniza, who is the director of St. Jude Global’s infectious diseases program.

“While one eye was on the training, we were using continuously the example of the pandemic,” Caniza said. 

Experts from local Memphis health institutions were present alongside doctors from 14 different countries, including Indonesia, India, Russia, Argentina and Mexico, she said, noting that because of the pandemic, the attendees from China canceled their trip to Memphis. 

The first days of the workshop were tense, she said. People were receiving updates from their home countries, which all were at different stages of the pandemic. Many were learning they’d likely be going into quarantine once they arrived home. 

With two days to go, the doctors realized they needed to change course, focusing their collaborative efforts completely on COVID-19, she said.

“We reviewed everything,” Caniza said. A librarian at the hospital was asked to pull together whatever literature was available on the pandemic. Attendees then broke into small groups of 4 or 5 and then reconvened to discuss findings.

About a month later, in partnership with the International Society of Pediatric Oncology (SIOP), St. Jude Global was able to launch its online database, named the Global COVID-19 Observatory and Resource Center for Childhood Cancer. 

As of Thursday afternoon, the registry has mapped 42 cases of COVID-19 in pediatric cancer patients from 14 countries. Data breaks down the cases by age, sex and additional diagnoses. Doctors from across the world, in countries at various stages of the pandemic, have shared insights at weekly virtual town halls. 

By age group, all children account for a small percentage of total reported COVID-19 cases. And of reported positive cases of the disease, the majority carry mild symptoms. So far, most of the reported cases among pediatric cancer patients are not severe, Caniza said. But there is still much to be learned about any long-term effects, she said. 

St. Jude’s database will monitor patients 30 and 60 days out from a COVID-19 diagnosis, she said.

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That leaves perhaps the greatest unknown to be how care for pediatric cancer will have to readjust as healthcare resources are diverted toward managing the pandemic, Rodriguez-Galindo said.

“I hope that one year from now when we meet with you, we’ll tell you, ‘Okay, it was not as bad as we thought, everything is back to normal,’” he said. “But I doubt it. I think this will be much more complicated.” 

So far, treatment for children at St. Jude had proceeded without notable interruptions, Rodriguez-Galindo said. But that hasn’t been the case with most cancer patients of all ages around the country. 

Childhood cancer treatment has been impacted by changes in surgery policies, with doctors and nurses typically focused on pediatric care being reassigned to adult patients. In some areas of the world, transportation to a hospital is limited. Foundations that help hospitals like St. Jude with fundraising efforts are also taking a financial hit, which could be cause for readjustments. 

“So COVID may get better in a few months,” he said, “but the long-lasting effects of the current epidemic will be in the health systems.” 

Myriad obstacles include ventilator availability and access to personal protective equipment for caregivers and transit to hospitals. Also included is the factor that some countries are still seeking best practices on general infection management, which St. Jude Global has been able to assist with, Caniza said.

Both Caniza and Rodriguez-Galindo echoed that knowledge will be everything moving forward. At St. Jude Global, they feel a responsibility to assist in filling in those gaps. There’s still more to learn about susceptibility for pediatric cancer patients, how the virus could behave year to year and the possibilities of long-term immunity or a successful vaccine. 

“Though we see that children seem to be less affected than adults and that right now children with cancer don’t seem to be having very severe disease to start with, we are still too early in that process,” Rodriguez-Galindo said. “So I think we just need more time. That’s why these registries are so important. That’s why creating this community for sharing experience is so essential as well.”

Laura Testino covers education and children's issues for the Commercial Appeal. Reach her at laura.testino@commercialappeal.com or 901-512-3763. Find her on Twitter: @LDTestino