Objective:
To follow people with GISTs and collect tumor tissue so that it can be studied in the lab.
Eligibility:
People age 6 and older who have a GIST.
Design:
Participants will be screened with a review of their medical records and samples.
Participants will enroll in 1 other NIH study, and may be asked to enroll in 2 other optional NIH studies.
Participants will have a medical history and physical exam. Data about how they function in their daily activities will be obtained.
Participants may speak with a genetic counselor. They may have genetic testing.
Participants will give blood samples. They may have a cheek swab. For this, small brush will be rubbed against the inside of the cheek.
Participants may have a computed tomography (CT) scan of the chest, abdomen, and pelvis. Or they may have a CT scan of the chest and magnetic resonance imaging (MRI) of the abdomen and pelvis.
Participants will be monitored every 6-12 months at the NIH Clinical Center, for up to 10 years before having surgery. If they need surgery, it will be performed at the NIH. Then, they will be monitored every 6-12 months, for up to 5 years after surgery.
If a participant has surgery, tumor tissue samples and research specimen will be taken.
If a participant does not need surgery, their participation will end after 10 years. If they have surgery, the 5-year monitoring period will restart after each surgery.
Histological confirmation or clinical presentation suspicious of GIST; histological confirmation will be preferably by review of archival tissue if available, fresh biopsy will not be required if inadequate tissue sample.
Age >= 6 years
ECOG performance status <= 2 (Karnofsky or Lansky >= 60%)
Ability of participant or parent/guardian to understand and the willingness to sign a written informed consent document.
None
Individuals with histologically confirmed or clinical presentation suspicious of GIST.
Cohort
Prospective
Not listed
Evaluate and follow patients with GISTs, particularly WT or treatment-refractory non-WT, to support translational research for this rare disease
Patients with non-WT GIST and WT GIST will have the durations of the DFIs described both within each patient as their own control and across patients. Analyses will be done separately for those with WT GIST and those with non-WT GIST as well as for all patients combined.
Assess disease-free intervals (DFIs) between surgical resection of disease for at least 5 years
Surveillance every 6-12 months and time of surgery, by tumor measurement and imaging studies, to assess disease-free intervals (DFIs) between surgical resection of disease for at least 5 years.
Characterize genomic and clinicopathologic features of GISTs
Characterization of the genomic and clinicopathologic features associated with GISTs.
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