From Patient Registry to a International Scientific Conference
Our study on NF1-associated gastrointestinal stromal tumors was accepted for presentation at ASCO this year - this milestones highlights the power of patient registries.
LRG & Collaborators Publish New Paper on Adjuvant Imatinib in KIT Exon 9 Mutations
Published on February 26, 2026, this international study represents a major collaboration between The Life Raft Group and thirty-five leading cancer centers across the U.S., Europe, and Japan to better understand treatment for gastrointestinal stromal tumors (GIST) with KIT exon 9 mutations.
Patient Perspective on Testing – Survey Highlights
Survey highlights show that most GIST patients receive mutational testing, but awareness of ctDNA testing remains low despite strong interest.
Our Latest Publication Focused on Mutational Testing
The LRG published "Barriers to mutational testing in patients with gastrointestinal stromal tumors (GIST) – a survey of Life Raft Group members" in BMC Gastroenterology, November 2022.
NIH Pediatric & Wildtype GIST Clinic 2021 Applications Are Open!
The LRG will be collaborating with the NIH again in 2021 to hold the Virtual GIST Tumor Board in place of the NIH's Pediatric & Wildtype GIST Clinic normally held in the DC area. Applications to have cases reviewed are now open.
Changes to the Medical Update Forms
The Life Raft Group is committed to ensuring your GIST journey is as manageable as possible. We want to ensure that we expand our resources in order to help patients stay on their treatment longer by helping them to manage their side effects.
NCI Mentions LRG as Component in Development of Ayvakit
In a new article from the NCI concerning the January 2020 approval of Ayvakit, (produced by Blueprint Medicines) the Life Raft Group is acknowledged in the section, “Capturing the Patient Experience.” We are proud to have played a role in supporting the research involved in bringing a new treatment to market for GIST patients.
The Life Raft Group Research Model – LRG Science
PDF is available of LRG Science to print here. Real World Evidence in Action Although targeted medicine has brought about immense progress in cancer treatment, there are still enormous challenges [...]
The Life Raft Group Research Model
Patient-provided, patient-focused data from the Patient Registry has been a core component of the LRG’s research model. Out of the foundation of real world data, we conducted a Side Effects Survey in the early [...]
Real World Evidence in Action: The LRG Research Model
Although targeted medicine has brought about immense progress in cancer treatment, there are still enormous challenges regarding patient survival. Randomized clinical trials (RCTs) driven by lab-based research have been the gold standard for identifying new [...]