Experts from the U.S. Food and Drug Administration (FDA), industry, and academia convened on October 7 for a virtual symposium on Rare Cancer Registries. Dr. Julia Beaver, Chief of Medical Oncology at the FDA said the meeting focus was: “To address critical questions in the field of rare cancer registries, with an ultimate goal to drive improvements in patient treatment, bringing safe and effective drugs to patients with rare malignancies in the most efficient and expeditious manner.”
The speakers shared how registry data have been used to advance research and improve clinical care for rare cancers within their own disciplines, discussed best practices for registry construction and data application, addressed how to integrate diverse types of data to make rare cancer registry data even more valuable, and strategized how best to support data-sharing and generalizability. Throughout the presentations and discussions, collaboration, transparency, and long-term planning emerged as fundamental to the most effective use of this powerful research tool.
Here is the link to read more or watch the videos.