St. Jude Children’s Research Hospital, in partnership with the International Society of Paediatric Oncology (SIOP), has launched the Global COVID-19 Observatory and Resource Center for Childhood Cancer.
The website offers health care providers around the world a space to share the latest information, insights and best practices in treating pediatric cancer patients who are infected with SARS-CoV-2.
The site also provides access to a pediatric cancer registry, a registration and reporting system that uses a secure, cloud-based platform to collect de-identified data from pediatric cancer patients who have been diagnosed with COVID-19. The registry uses data from institutions around the globe and provides real-time analytics and up-to-date information.
“We are facing a global challenge like never before, and we need to articulate a response that brings together multiple organizations around the world,” said Carlos Rodriguez-Galindo, M.D., director of St. Jude Global. “Not only is this virus placing the lives of children with cancer at risk, but it is also disrupting the entire continuum of care. Access to care around the world is limited, and our international partners, like us, are focusing substantial hospital resources on fighting COVID-19.”
Organizers say the registry’s success depends upon robust international participation and collaboration. The global pediatric hematology and oncology community will have access to the data and will receive regularly updated summary information about reported cases--including the number of cases by country and by treatment. The registry’s data repository contains only de-identified data, in accordance with the Health Insurance Portability and Accountability Act’s Safe Harbor de-identification provisions.
“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,” said Professor Kathy Pritchard-Jones, SIOP president. “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.”
Pritchard-Jones said this is a call to action for the pediatric hematology and oncology community to start sharing their experiences to help children.
“Through St. Jude Global, we have started a new effort to coordinate knowledge-sharing for treating pediatric cancer patients who have COVID-19,” said St. Jude President and CEO James R. Downing, M.D. “Development of COVID-19 is particularly worrisome because these patients have suppressed immune systems from cancer treatments. Our physicians organized this platform for collecting data, sharing clinical experiences, developing online seminars and workshops, and outlining best practices for treating children with cancer and COVID-19.”
In addition to the registry, the website offers current resources and educational content for clinicians. Forums with trending topics and featured seminars allow clinicians worldwide to discuss COVID-19 insights and treatments.
“There are lessons learned from countries where the pandemic peaked ahead of us,” Rodriguez-Galindo said. “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 health care leaders will continue to be a catalyst for the registry.”
Global COVID-19 Observatory and Resource Center for Childhood Cancer . Appl Rad Oncol.