The Life Raft Group and establishment of the Virtual GIST Tumor Board in partnership with NIH.

Abstract

e278 Background: In 2008, the National Institutes of Health (NIH) launched an in-person clinic for the Pediatric and Wild-type GIST community allowing clinicians and researchers from across the world to collaborate with each other and meet patients and their families firsthand. This led to several important breakthroughs, including investigating germline mutations in the succinate dehydrogenase complex (SDH), which helps physicians understand how wild-type GISTs are formed, and that Pediatric GIST can be diagnosed after age 18 and should thus be titled “SDH-deficient GIST.” Yet, decreases in government funding have reduced the number of in-person meetings to one per year. To supplement this loss of an in-person clinic, The Life Raft Group partnered with the NIH to launch the Virtual GIST Tumor Board. Methods: The process is an augmentation of how virtual tumor review boards work. If selected, doctors of GIST patients log on and review their de-identified patient case with a panel of experts using the internet, secure servers, and state-of-the-art video conferencing software. The LRG uses cutting-edge technology to connect the local treating physicians and their team with key opinion leaders in the field of Pediatric (SDH-deficient) GIST. Participants virtually access radiology films such as CT scans and other necessary medical reports to help review particular cases and provide advice. Results: The Virtual GIST Tumor Board has met twice, and reviewed cases from patients as far away as Latin America and the Ukraine. The physicians of these patients have elevated the level of care they provide due to the interaction with experts the Board makes possible. Conclusions: The purpose of the Pediatric GIST Virtual Tumor Board is to bring together leading experts to discuss pediatric/wild-type (SDH-deficient) GIST cases, and be an educational resource for physicians. It is transformative, because it provides valuable access for patients and doctors who would not be able to attend an in-person clinic due to resources or distance; educates doctors on the most up to date treatment options, trials, and studies; serves as a triage to bring patients to the in-person clinic; and encourages collaborative efforts of leading GIST experts around the world.