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GIST Support International - Donating Tissue to Research
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Donating Tissue to Research 

The samples of tumors removed from patients during surgery are extremely valuable to researchers who are striving to find a cure.
Three types of samples are helpful:

  1. samples from past surgery: a paraffin block of tissue or unstained slides 
    Samples are frequently stored in the hospital where surgery was performed for up to 10 years.  Archived paraffin blocks of tissue and unstained slides from past surgeries can be requested by the patient (or a parent, if the patient is a minor) from the pathology department at the hospital where surgery was performed.  Tissue can be utilized by Dr. Sosipatros Boikos for inclusion in the ongoing WT GIST research being conducted at the NIH WT GIST Clinic. Please email Dr. Boikos with questions pertaining to archived tissue donation.
  2. samples from upcoming surgery: flash frozen tissue samples
    Requests to save flash frozen tissue must be made through your surgeon and the pathology department prior to the operation.
  3. samples from upcoming surgery: fresh tissue samples of living tumor cells
    To obtain fresh tissue samples the surgery must be performed at one of a few, selected major research facilities.  Living tumor cells are harvested during surgery.  These cells can be either be developed into a living cell line or into a mouse model.  

If you are scheduling surgery for yourself or your child, consider having flash frozen tissue samples saved and/or fresh tissue harvested for research. GIST Support International has designated representatives to facilitate procurement of SDH-deficient tissue for research.  Please email Becky Bensenhaver at: to be directed to the appropriate representative for your geographical area. The more advance notification time given before surgery, the better.

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