Data drives cures. The Life Raft Group saves lives.
Let’s change the future of rare disease research together.
Patient registries collect valuable clinical & patient-reported data that drives innovation in research and leads to new treatment breakthroughs. Our LRG Patient Registry has been curating this type of information for over 20 years.
By leveraging patient registry data, we have significantly influenced medical guidelines, pathology practices and clinical trials. This work has led to partnerships with researchers on many studies, including funding a clinical trial in GIST.
Your help is crucial! Join us on a journey to reimagine how we engage in GIST research and help save lives. You can fuel GIST research by supporting our mission to enhance our current Patient Registry platform. Our goal is to vastly improve our ability to collect life-saving data, connect with patients, involve new clinicians to expand our database, and provide researchers with timely information.
By investing in our plan to upgrade and expand our Patient Registry platform, you can help save lives. This new platform will be more accessible, user-friendly, and equipped with the latest Al technology and advanced analytics. Utilizing these innovative tools, we can make a significant impact in the fight against GIST. Together we can change OUR future.
GIST Advocate Rod shares how patient-reported data & experiences in the LRG Patient Registry changed his quality of life while living with a rare disease like gastrointestinal stromal tumor. Data collected has real-time benefits for patients as well as for researchers.
Facts about our registry:
Our goal is to find cures for rare diseases but until then, the data we collect allows us to educate and advocate for patients in the decision-making process concerning treatments, trials, surgery & side effects.
The data allows us to partner with researchers towards solutions, treatments, and trials. In the past five years, we’ve affected changes in treatment guidelines (NCCN), pathology guidelines (CAP), held 2 global virtual tumor boards covering difficult cases, contributed to over 100 publications, 28 studies and supported the success of 10 GIST-relevant clinical trials.
Where donor funds go:
62% of our funding goes to research, and this registry project will be the biggest part of our operations over the next three years. For GIST, 5000-6000 people a year are diagnosed, and for some rare disease, that number is much lower. Registries connect people as well as building a picture of a disease landscape through data. We can directly support patients who are navigating complicated journeys through this connection.
Interested in how your participation can make an impact? Let us know, and we’ll eagerly share more details about our registry and our ambitious plans for including new diseases & accelerating research.