The Life Raft Group (LRG) Patient Registry is a structured database that collects comprehensive information about individuals diagnosed with GIST. The purpose of this registry is to facilitate research, improve understanding of the disease, track patient outcomes, and ultimately enhance patient care.
An organization called the Life Raft Group (LRG) wants to find out more about a cancer called Gastrointestinal Stromal Tumors (GIST) as well as other cancers that may or may not be related to GIST. To collect this information, LRG has created a research registry. A registry is a place where medical information, family history and other related information from patients is collected and stored for medical research. The purpose of the Life Raft Group GIST registry is to collect and store medical information and other information from individuals with the same disease or other cancers that share commonalities such as molecular targets, treatments, or other factors. Information from patients in this registry will be used for medical research to better understand GIST and these other diseases. Scientists studying GIST and these other diseases need more accurate, real-world information to understand how these diseases affect people. People with GIST and other related or unrelated diseases are being asked if they would like to participate in the Life Raft Group registry. The Life Raft Group GIST registry is also linked to a tissue bank, which is a place that stores tumor tissue, blood or other samples from patients. Participants may also be asked to provide samples to the tissue bank. Participants would need to read and sign a separate consent form about the tissue bank. Participants do not have to take part in any other Life Raft Group activities, including the tissue bank and online forums, to take part in this registry.
Study Type
OBSERVATIONAL
Enrollment
5,000
The Life Raft Group
Wayne, New Jersey, United States
RECRUITINGOverall survival
Time from registry enrollment until death from any cause.
Time frame: From the date of registry enrollment until death from any cause, assessed through follow-up for up to 25 years.
Progression Free Survival
Time from registry enrollment until documented disease progression or death, whichever occurs first.
Time frame: From 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.
Recurrence Free Survival
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.
Time frame: From 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
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 frame: From 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 of Medication
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.
Time frame: From the date of treatment initiation until permanent discontinuation of the medication for any reason, assessed through follow-up for up to 25 years.
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