In the Beginning…
Since its inception, the Life Raft Group was built on a foundation comprised of real world evidence based on data powered by and for patients.
From our first survey initiated in December of 2000, to the platforms and initiatives we have created in the past few years, our focus has always been on reporting real world evidence in a timely manner to supplement the data generated by labs and clinical trials.
The goal has always been to improve patient treatment outcomes.
In the beginning of the LRG’s existence, we began to discover the importance of real world evidence from our patient community, and started to record patient-reported information on index cards. By collecting this clinical data, we were able to disseminate vital information to patients, in many cases more rapidly than by waiting for more formal studies to be published. This was the beginning of what is now the largest GIST Patient Registry in the world, with data from patients around the globe. Our early surveys reported on a variety of topics that were key to patient survival, from the effectiveness of what was then STI-571 (Gleevec) to side effects management.
As more information about GIST and its origins and treatments evolved, we continued to leverage our Patient Registry data, enhancing it with the establishment of our GIST Collaborative Tissue Bank and upgrading it to an SQL platform. Then, we began to think of ways to leverage patient data focusing on ways to improve the research process and improve patients’ lives.
Project InterGR: The Key to Patient Survival
Our next step was to create Project InterGR, an encompassing umbrella of platforms and initiatives that facilitate fostering collaborations and accelerating research through patient-driven data.
GIST/PRIME: The Key to Patient Empowerment
Using the already established LRG Patient Registry model with over 18+ years of valuable data, we expanded the concept of patient-driven clinical data with the construction of GIST/PRIME, an interactive component of the LRG Registry. GIST/PRIME brings the sophistication of the registry into the hands of the patient and allows them to be involved in research directly. Additionally, by giving our membership a tool to monitor their GIST history and contribute their data, they can work with their medical team to improve care.
SideEQ — Side Effects Management for Compliance + Quality of Life
Next, we developed SideEQ, an interactive tool which allows patients, caregivers and healthcare professionals to share effective side effects management knowledge. By finding ways to mitigate the negative side effects intrinsic to many medications, patients can optimize their overall health, remaining compliant with their treatment regimen while improving outcomes.
Recognizing the value in this data and following their mandate to bring patients into the research process, the FDA joined forces with the LRG to create a working group of advocates, pharma and government officials to utilize SideEQ in an observational study.
Expanding the Concept
Always ready to meet the needs of a changing research landscape, we continue to expand on Project InterGR’s parameters to support our mission: Enhancing survival and quality of life for people living with GIST and other cancers through patient-powered research, education & empowerment and global advocacy efforts.
New initiatives such as Project Surveillance, a collaborative platform for GIST experts to share real world, real time clinical observations in a timely, actionable manner, and our SDH-Research Consortium will support the critical research need for pediatric and SDH-deficient GIST patients, to assure that real-world evidence can continue to be leveraged to impact patient survival.
Through Project InterGR, The LRG stands ready to expand our horizons by collaborating and sharing our expertise in real world evidence with the global community.
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