The health impact of SARS-CoV-2 and COVID-19 among children and adolescents with a cancer diagnosis is currently unknown. As childhood cancer is itself a rare occurrence, St. Jude Children’s Research Hospital and the International Society of Paediatric Oncology (SIOP) have created a global COVID-19 registry, so we can all learn more about the impact of the virus on our patient population and be better prepared to meet future such challenges.
We invite health care providers worldwide to voluntarily report any patient with a malignancy or prior hematopoietic stem cell transplant less than 19 years of age at the time of a laboratory- confirmed SARS-CoV-2 infection. Data reporting is requested at initial presentation of the case and at 30- and 60-days post-diagnosis follow-up.
Using the aggregate information from these reported cases, we aim to provide updates to the global pediatric cancer community and leverage the data to support community-initiated online case discussions. The success of this initiative depends on our collective voluntary participation as a global community so that the most children benefit from our evolving, shared knowledge of the pandemic.
1. This is an international effort—we are counting on robust participation and collaboration.
2. The pediatric hematology/oncology community will be provided with regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc., so the entire childhood cancer community has access to these data.
3. The St. Jude Children’s Research Hospital IRB has determined that the de-identified data repository does not constitute human subjects research as per US regulations.
4. The data repository contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards.
To review the questions and data fields in our online Registry survey, review this downloadable PDF version of the survey. When ready to fill out the survey, use our online form. Do not submit this PDF.
If you have questions about the registry, please email us at firstname.lastname@example.org.