Organizers say the success of the registry depends on strong international participation and collaboration. The global pediatric hematology and oncology community will have access to the data and will regularly receive a summary of up-to-date information on reported cases – including number of cases by country and treatment. The data record repository only contains data without identifying information, in accordance with the provisions of legal protection of information without identification of the Law of Portability and Responsibility of Health Insurance
“We want to be able to register all the cases of children with cancer affected by COVID-19 and let that guide our decision making,” said Professor Kathy Pritchard-Jones, president of SIOP. “The registry is a high-level initial effort to obtain 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 the care and control of childhood cancer ”.
Pritchard-Jones said this is a call to action for the pediatric hematology and oncology community to begin sharing their experiences in helping children.
“Through St. Jude Global, we began a new effort to coordinate knowledge sharing to treat pediatric cancer patients with COVID-19,” said St. Jude Global President and CEO James R. Downing, MD “The development of COVID-19 is particularly worrisome because these patients have suppressed immune systems due to cancer treatment. Our doctors organized this platform to collect data, share clinical experiences, create online seminars and workshops, and define best practices for treating children with cancer and COVID-19. “
In addition to registration, the website provides current educational content and resources for clinicians. Hot-topic forums and featured seminars allow clinicians from around the world to discuss COVID-19 knowledge and treatments.
“We have lessons to learn from countries where the worst of the crisis is over,” Rodriguez-Galindo said. “We have already held educational sessions with doctors and infectious disease experts from Singapore, Japan, China and Russia. These meetings have been translated into Spanish, French and Arabic. These opportunities to meet with world leaders in healthcare will continue to be the catalyst for registration. ”
Mission of St. Jude Global is to improve the survival rates of children with cancer and other catastrophic diseases globally, by sharing knowledge, technology and organizational skills. St. Jude is leading the way the world understands, treats and cures childhood cancer and other deadly diseases. It is the only Comprehensive Cancer Center designated by the National Cancer Institute (National Cancer Institute) exclusively dedicated to children. The treatments developed in St. Jude They have helped raise the overall childhood cancer survival rate from 20% to 80% since the hospital opened more than 50 years ago. St. Jude freely shares the progress it makes, and every child saved at St. Jude means that doctors and scientists around the world can use that knowledge to save thousands more children. Families never receive a bill from St. Jude for treatment, transfers, accommodation or food, because the only thing a family has to worry about is helping their child to live. To learn more, visit stjude.org or follow St. Jude on social media: @stjuderesearch.
About SIOP
Founded in 1969, the International Society for Pediatric Oncology (International Society of Paediatric Oncology, SIOP) is the only multidisciplinary global society fully dedicated to pediatric and adolescent cancer. The society has about 1,800 members from around the world, including doctors, nurses, other health professionals, scientists, and researchers. Our members are dedicated to increasing knowledge about all aspects of childhood cancer. SIOP envisions that “no child should die from cancer” and aims to improve the lives of children and adolescents with cancer through global collaboration, education, training, research and advocacy. To learn more, visit siop-online.org or follow SIOP on social media: @WorldSIOP.
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