Recently, the Life Raft Group began work on a survey project sponsored by Novartis Pharmaceuticals designed to assess knowledge and practices among patients and physicians regarding mutational analysis and plasma level testing.
The project, which will also incorporate focus groups and expert panel interviews, is an attempt to assess the behaviors and rationales that motivate GIST patients and physicians to either have or not have these tests performed and identify any obstacles that may exist. Once these obstacles have been identified, the Life Raft Group will then be able to more clearly develop strategies to overcome them, with the ultimate goal being an increase in the availability of these tests for GIST patients. In addition, past and present clinical trials will be studied to see whether mutational analysis and plasma level testing were included in the trial protocol, and a number of principal investigators from these trials will be interviewed to help better understand the reasoning behind the exclusion or inclusion of these tests. In addition to the survey and interviews, the LRG GIST Patient Registry will be examined to see if patients who have had mutational analysis and/or plasma level testing have better overall survival than those that did not.
The LRG believes that the information garnered from these tests is potentially crucial information for both doctors and patients and thus these tests should be made more readily available. One of the issues that has hindered the availability of these tests is a lack of data regarding how often they are performed and their impact on patient survivability. Thus this survey is a very important step towards making more data available, and ultimately, helping to make it easier for patients to get the tests.