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 in the ongoing WT GIST research being conducted at the NIH WT GIST Clinic.  Please email: with questions pertaining to archived tissue donation.
  2. samples from upcoming surgery: flash-frozen tissue samples
    Flash frozen tumor samples are needed for research pertaining to SDH-deficient GIST metabolism research.
  3. samples from upcoming surgery: viably-frozen tissue samples
    Viably-frozen tumor samples are needed in order to develop mouse models or cell lines for SDH-deficient GIST research.

If you are scheduling surgery for yourself or your child, please consider having flash-frozen or viably-frozen tissue samples saved for research.  The SDH-deficient GIST Research Advocates (SDH-RA) can provide guidance and assistance toward making arrangements for frozen samples to active researchers.  Visit the SDH-RA website at:, or by email at:  The more advance notification time given before surgery, the better.