Our goal is simple, a cure. Until that goal is achieved, we must maximize benefit from today’s tools. Timely knowledge and information is key to achieving these goals. The Life Raft Group collects this information to allow us to share it with GIST patients and caregivers.
|Why Join Patient Registry?
To this end, we have created a unique Patient Registry. All of our information comes directly from patients or caregivers. Using this data we examine questions that are not being answered quickly enough by current trials or that are not being looked at in clinical trials. We also monitor the latest treatments for early indications of a response.
We look for treatment and response trends that can help our members reach tomorrow’s cure. We reduce the lethal lag time between discoveries of important data to communication to the GIST community.
Since the LRG is not limited by the design of traditional clinical trials, we have significantly increased flexibility in the areas that we can examine. We are better able to follow patients for long periods of time and across institutional boundaries. Because the LRG is founded by patients and caregivers, we are in touch with the real-life issues that come up on a daily basis. This connection allows us to track treatments and issues that are of concern to GIST patients today.
Perhaps more importantly, by moving beyond the role of patient-advocates to become patient-scientists, we are changing the medical research environment. We can design and conduct our own studies. We are claiming a voice at the decision-making table and influencing what research is being done and how it is being conducted.
Become a member of our patient registry today and help your peers and other patients find a cure for GIST.