Share your story. Strengthen the future.
Every GIST journey is personal — and powerful. By joining the LRG Patient Registry, you become part of a global community working to improve care, fuel research, and drive real change.
Why This Data Matters
Unlike clinical trials that only capture snapshots in time, the LRG Patient Registry is a long-term natural history study designed to follow the full course of your journey. It gives researchers and clinicians a deeper understanding of how GIST behaves in the real world — and helps patients make more informed decisions.
By contributing your experience, you help answer important questions:
- How does GIST evolve over time?
- How do different mutations impact treatment response?
- What patterns do we see in long-term outcomes?
- Where do patients need more support?
- What side effects are most common in certain treatments?
What You Gain as a Participant
This isn’t just about contributing to research — it’s about empowering yourself with tools to take control of your care.
When you participate in the Registry, our team helps you:
- Understand your clinical reports and explain all details of your GIST
- Track your tumor evolution over time
- Monitor how your tumor responds to treatment
- Identify key trends in your test results, side effects, and outcomes
- Keep your full medical history organized in one secure place
- Share your history with your care team for more personalized, informed decisions
- Access research updates and opportunities relevant to your subtype and treatment history
- Connect with a wider community of patients facing similar challenges
How Your Story Helps Others
When we combine your experience with that of thousands of others, we create a more complete picture of what it means to live with GIST. Your participation helps:
- Improve treatment guidelines
- Identify what works best across different subtypes
- Influence new research directions and development of new therapies
- Advocate for better resources and support systems for patients
- Enhance the understanding of GIST
“For the first time, I feel like I have a full picture of my disease. I can see how my tumor has changed and how my body has responded. It’s helped guide the conversations I have with my doctor and fully understand and manage my GIST.” – LRG GIST Registry Participant
Your Privacy Comes First
We know your medical information is deeply personal. That’s why the Registry is built to the highest standards of security and confidentiality.
Participation is:
- Voluntary
- IRB-approved, with ongoing ethical oversight
- HIPAA-compliant, fully aligned with federal privacy regulations
- Encrypted and secure, with your data stored safely
- Used only in de-identified and aggregated form — your personal details are removed and you will be assigned a patient ID. Your data is combined with others before it’s ever used in research
We never share your personal information, and you control of what information you contribute.
Ready to Take the Next Step?
Whether you are newly diagnosed or have been managing GIST for years, your story matters! And you deserve tools to help make sense of it. You can call 973-837-9092 or email: patientregistrydepartment@liferaftgroup.org for more information or you can fill out this form to get started:
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