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 15, The Life Raft Group article, authored by LRG Staff Denisse Montoya, Jerry W. Call, Jennily Eshak, Pete Knox, Maeven Luedke, Sahibjeet Kaur, Sara Rothschild, Mary Garland & Norman J. Scherzer, was published for open access.

The article focused on mutational testing among GIST patients as observed in our LRG GIST Patient Registry. The study was initiated due to the observed rates of mutational testing among the general GIST patient population which is about 26.7% in the U.S. despite standard guideline recommendations from agencies such as the National Comprehensive Cancer Network (NCCN) and College of American Pathologists (CAP). 1


(excerpted from the study)

Due to the low mutational testing rate in patients with Gastrointestinal Stromal Tumors (GIST), The Life Raft Group (LRG), a non-profit organization that provides support, advocacy and conducts research for patients with GIST, analyzed various factors that may have an impact on patients’ ability to receive mutational testing.

A total of 295 patients/caregivers participated in this study (response rate: 29.4%). The percentage of patients who indicated they had received mutational testing was much higher in this survey (80%) than in the general GIST community (26.7%).

Several reasons were cited for having a test, including: “My doctor ordered/suggested that I have it done” (54%); “The Life Raft Group advised/suggested I have it done” (25%); “I asked my doctor to have it done” (22%); “I had it done as part of a clinical trial” (5%); “I am not sure” (3%) and “Other” (14%). Mutational testing resulted in a treatment change in 25% of cases. Patients were able to select more than one option when completing this question resulting in a percentage greater than 100.

The LRG membership is voluntary and proactive; patients who join are more likely to participate in surveys and mutational testing, as well as more likely to have a GIST specialist. Mutational testing can influence understanding of a patient’s GIST and the treatment best suited to each case. These are extremely important findings, as it helps ensure that patients are on the proper treatment, which should lead to better outcomes.


  1. Florindez J, Trent J. Low frequency of mutation testing in the United States: an analysis of 3866 GIST patients. Am J Clin Oncol. 2020;43:270–8.