Life Raft Group Registry Collecting Health Data from People with Gastrointestinal Stromal Tumors to Support Research and Patient Care

What this Trial Is About

Researchers are collecting detailed information about individuals diagnosed with Gastrointestinal Stromal Tumors GIST and other related or unrelated cancers that may share molecular targets or treatments. This observational registry aims to improve understanding of GIST and similar diseases by gathering real-world data to support medical research and enhance patient care. The registry is managed by the Life Raft Group LRG, an organization focused on this rare cancer. Participants provide medical information, family history, and other relevant data that are stored in a structured database for research purposes. The registry is linked to a tissue bank where tumor tissue, blood, or other samples may be stored for further study, though participation in the tissue bank is optional and requires separate consent. The registry does not require involvement in other LRG activities such as online forums. Throughout the study, participants health outcomes are followed for up to 25 years to track overall survival, progression-free survival, recurrence-free survival, disease-free survival, and duration of medication use. This long-term follow-up allows researchers to observe the course of GIST and related conditions over time. Participants contribute by sharing their health information and may undergo follow-up assessments as part of ongoing data collection.

LRG GIST Patient Registry