A NEW LRG Patient Registry is launching soon!

For more than two decades, the LRG Patient Registry for GIST has been integral to advancing our mission to improve outcomes for people living with gastrointestinal stromal tumors (GIST). Our LRG Patient Registry has been utilized by researchers for countless research studies and has represented the idea that patient-reported outcomes is the future of science and cancer research.

Today, over 25 years later, we are proud to introduce the next chapter in that legacy.

After years of planning, collaboration, and countless hours of development, we are launching a completely reimagined LRG Patient Registry.  The registry has been completely rebuilt with the future in mind and provides a modern, intuitive experience for patients while creating a more powerful platform for researchers working to answer some of the most important questions in rare cancer.

As GIST researcher and oncologist Michael Heinrich shared at ASCO 2026, “It’s like doing a jigsaw puzzle, and you only have some of the pieces. You might not be able to figure out what the picture is. If you have more pieces, it will become more clear.”

This new patient registry will put the puzzle pieces together, faster and more efficiently than ever before because patients cannot wait.

Built by the Community, for the Community

Creating this registry has been one of the most ambitious projects in our organization’s history.

Our staff worked alongside software developers, researchers, clinicians, patient advocates, and, most importantly, patients to design a platform that reflects the real needs of the GIST community. Every feature was carefully considered with one goal in mind: making it easier for patients to participate in research while generating higher-quality data that can accelerate scientific discovery.

We know that behind every data point is a person. That’s why we’ve focused on creating a registry that is both scientifically rigorous and patient friendly.

So, What’s New?

The redesigned registry introduces a variety of new features that make participation easier than ever before.

Participants will be able to:

  • Find clinical trials that may be relevant to their diagnosis.
  • Upload medical records and supporting documents quickly and securely.
  • Track symptoms, treatments, and side effects over time.
  • View a personalized health timeline.
  • Complete surveys through a streamlined, mobile-friendly interface.
  • Update medical information more easily as their journey evolves.
  • Participate from virtually anywhere using computers, tablets, or smartphones.
  • Receive a more personalized experience with improved navigation and simplified questionnaires.

Behind the scenes, the platform also offers significant improvements in data quality, security, and research capabilities. Enhanced analytics, standardized data collection, and improved interoperability will help researchers identify trends more quickly and generate meaningful insights from patient-reported data.

Why Patient Registries Matter

For common diseases, researchers often have access to large datasets collected from thousands or event millions of patients.

Rare cancers are different; there are less patients with the specific cancer and they are spread across the world, so gathering enough information to answer critical research questions can be incredibly challenging. Patient registries bridge that gap by bringing together experiences from individuals regardless of where they receive care.

Over the years, the LRG Patient Registry has contributed to numerous scientific publications, informed clinical guidelines, and helped researchers better understand treatment patterns, mutation types, and patient outcomes. The registry has become one of the world’s most valuable sources of real-world GIST data.

With this new platform, we hope to build on that legacy.

Looking Toward the Future

This new registry is designed not only for today’s research questions, but for tomorrow’s discoveries.

Its modern architecture allows us to incorporate emerging technologies, including artificial intelligence and advanced data analytics, to help identify patterns that might otherwise go unnoticed. As the registry grows, these tools have the potential to accelerate hypothesis generation, support precision medicine, and provide researchers with new ways to understand GIST.

Just as importantly, the platform was intentionally designed to be scalable.

Our vision extends beyond GIST. We believe this model can serve as a blueprint for other rare disease communities seeking to build high-quality patient registries that empower patients and advance research. By creating a flexible, adaptable platform, we hope to reduce barriers for other organizations and help accelerate research across multiple rare diseases.

The recent expansion of The Life Raft Group’s mission to include liposarcoma is just the beginning. This platform positions us to support additional rare disease communities in the years ahead while maintaining the same commitment to patient-centered research that has defined our organization since 2002.

Thank You

None of this would have been possible without the dedication of our patients, caregivers, physicians, researchers, partners, and supporters.

Most of all, we want to thank every registry participant. Your willingness to share your journey has fueled discoveries that have changed lives, and your continued participation will help shape the future of GIST research.

The future of rare cancer research starts with patients. And thanks to this new registry, that future has never looked brighter.

LRG Medical Advisory Board Members talk about the importance of Patient Registries for GIST research.