St. Jude Children's Research Hospital
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The outbreak of COVID-19 has brought on uncertain times, especially for pediatric oncology patients who have lowered immune systems and who have the need for continued optimal care by their healthcare providers. To address some of these concerns, St. Jude Children’s Research Hospital, in partnership with International Society of Paediatric Oncology (SIOP), has recently launched its Global COVID-19 Observatory and Resource Center for Childhood Cancer to gather data and measure the impact of COVID-19 on children with cancer and to provide a way for leading healthcare providers across the globe to share insights with each other.
In a world where a sweeping pandemic can not only pose a risk to children with lowered immune systems but also potentially divert resources from these children to those who are infected with the virus, Carlos Rodriguez-Galindo, M.D., director of St. Jude Global, says it’s important to provide a center for these resources in order to maintain quality care within the branch of pediatric oncology.
“We are trying to answer questions that have never been even considered with this new disease, a new pandemic affecting health systems, health services, and visions,” says Rodriguez-Galindo. “This is a registry, basically. So we want to get a better sense of what is the impact of COVID-19 on childhood cancer. So for that, we have to have this open observatory that will allow for easy registration of cases. That way we can almost, in real time, get a sense of what is the impact of COVID around the world on children with cancer. ... So we will be able to get a little bit more of an assessment of this impact.”
The website features a myriad of resources for pediatric oncologists to peruse, with literature covering subject matter like COVID-19’s impact on pediatric oncology, general COVID-19 information, treatment, prevention, and more, as well as resources to help provide accurate and up-to-date information to parents and families.
Some of these family resources are also directly available to parents and families through a public resource center called Together. Here, families can access information on how to talk to children about COVID-19, care for family members with COVID-19, and more. Together also features a coloring book and an activity book to help children understand and learn about COVID-19.
The resource center for healthcare providers also features a secure, cloud-based pediatric cancer registry for healthcare providers to collect de-identified data from pediatric cancer patients who have been diagnosed with COVID-19. Data comes from institutions around the globe and provides real-time analytics and up-to-date information.
“We want to be able to capture all the cases of children with cancer affected by COVID-19 and let that inform our decision-making,” says Professor Kathy Pritchard-Jones, president of SIOP. “The registry is a high-level, first-pass effort to get the information quickly, because what we find out now can guide future interventions. With the data generated by the registry, we will be able to create an observatory to monitor the impact of COVID-19 on childhood cancer care and control.”
Healthcare providers are invited to share their experiences through the Collaboration Space. Here, providers are encouraged to contribute to discussions, ask and answer questions, participate in surveys and polls, and take part in webinars and town halls.
St. Jude Children's Research Hospital
“There are lessons learned from countries where the pandemic peaked ahead of us,” says Rodriguez-Galindo. “We’ve already held educational sessions with physicians and infectious diseases experts from Singapore, Japan, China, and Russia. These meetings have been translated to Spanish, French and Arabic. These opportunities to meet with global healthcare leaders will continue to be a catalyst for the registry.”
The Global COVID-19 Resource Center fits in with St. Jude’s mission of improving survival rates in children with cancer and other catastrophic diseases worldwide through the sharing of knowledge, technology, and organizational skills.
“As the COVID-19 pandemic hit us, the health systems were disrupted all over the world,” says Rodriguez-Galindo. “So it's not only about what we see right now on TV, what we see in the press about patients suffering from COVID-19. It’s also the health systems, access to care, access to hospitals, access to drugs, and shortages with personnel that are affecting children with cancer, and that is the major challenge that we need to face. What St. Jude is about is working together towards a common goal.”