We need a CancerLINQ for pediatric oncology!
CancerLINQ, a subsidiary of the American Society of Clinical Oncology, is a database of individual patient data from over 100 practices of patients who are NOT enrolled in clinical trials. It represents real-world patient journeys. "CancerLinQ Discovery®️ enables the oncology community to translate big data from CancerLinQ®️'s pool of de-identified data from an ever-growing number of patients into real-world insights to drive research that can improve the overall cancer care."
This concept is even more valuable in pediatric oncology. 100 children per year in the USA are diagnosed with CML. We do not know the ideal treatment for them, and it is very unlikely that prospective clinical trials will provide the answer. What if we had a record of many of these children registered in a CancerLINQ like a database that could be queried to see what factors determine the outcome? This concept is relevant for other rare childhood cancers that are unlikely to be studied in prospective clinical trials. Collect basic information and get annual updates, all deidentified, that can be queried to answer real-word clinical problems.