Our goal is simple – a cure.
Until that goal is achieved, our responsibility-with the help of patients and caregivers- is to collect as much evidence as possible to put the puzzles together of this rare disease called GIST. Therefore, the Life Raft Group has decided to create a GIST Patient Registry to capture specific data elements of the disease that will influence the overall survival of patients.
The GIST Patient Registry is an ongoing research study where GIST patients and caregivers from all over the world volunteer their information regarding their GIST treatment. This information is used to understand the natural history of GIST, treatment outcomes, and to help accelerate research with our Real World Evidence Data.
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. Because our GIST Patient Registry is only driven by patient-reported data, we are better at following patients for prolonged periods of time and across institutional boundaries causing a significant impact in reaching and understanding real-life issues that come up daily in the patient’s journey. This strong connection allows us to track traits of the disease that are of concern to the GIST community. The data collected allows us to educate/advocate patients in the decision making and treatment options for their disease.
Perhaps more importantly, by moving beyond the role of patient-advocates to become patient-scientists, we are changing the medical research environment. We are claiming a voice at the decision-making table and influencing what research is being done and how it is being conducted.
Advantages of joining the GIST Patient Registry:
- Provides a user-friendly way to organize your medical records
- Can be easily accessed to update your medical information
- Puts the management of your information in your hands, helping to facilitate efficient communication with medical professionals
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