LRG GIST Patient Registry
This is a registry, which is a structured database, collecting information from people diagnosed with Gastrointestinal Stromal Tumors (GIST), a type of cancer. The Life Raft Group (LRG) created this registry to help researchers better understand GIST and other related cancers. They are collecting medical information, family history, and other details to improve patient care and track how people with GIST are doing over time. This study is looking at how long people live after diagnosis (overall survival), how long they live without their cancer getting worse (progression-free survival), and how long they live without their cancer coming back after surgery (recurrence-free survival). You can join if you have a GIST diagnosis and provide written consent. There are no age restrictions.
- Study design
- This is an observational study aiming to enroll 5000 participants. It is a registry that collects information over time.
- What's involved
- You would provide written and informed consent. You may also be asked to provide samples to a tissue bank, which would require a separate consent form.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants will be followed for up to 25 years to track overall survival, progression-free survival, and recurrence-free survival.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
LRG GIST Patient Registry
At a glance
Conditions
Where it's being run
1 sites across 1 statesWho to contact
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What this trial measures
- Overall survivalFrom the date of registry enrollment until death from any cause, assessed through follow-up for up to 25 years.
Time from registry enrollment until death from any cause.
- Progression Free SurvivalFrom the date of registry enrollment until the first documented disease progression or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
Time from registry enrollment until documented disease progression or death, whichever occurs first.
- Recurrence Free SurvivalFrom the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
Time from registry enrollment (or from complete surgical resection, if that is the clinically relevant starting point) until the first documented recurrence of GIST or death from any cause, whichever occurs first.
- Disease Free SurvivalFrom the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
Disease-free survival is defined as the time from complete surgical resection of localized GIST until the first documented recurrence of GIST or death from any cause, whichever occurs first.
- Time of MedicationFrom the date of treatment initiation until permanent discontinuation of the medication for any reason, assessed through follow-up for up to 25 years.
Duration of treatment with a specific systemic therapy (e.g., imatinib, sunitinib, regorafenib, ripretinib), measured from treatment initiation until permanent discontinuation for any reason, including disease progression, toxicity, patient preference, or death.