For patients who have recently been diagnosed with cancer, donating a tissue sample is probably the last thing on their minds. But it’s an important consideration. Researchers often rely on donated tissue to advance research that will ultimately lead to an increased number of treatment options, and most likely, increased survival for patients with cancer. This is a simple way for you to become a “GIST hero.”
Why should you donate tissue?
Donating tissue for scientific causes is a personal decision, but can also be an altruistic one, especially for rare cancer research. There are several valid reasons why you should consider it. Donated tumor samples have allowed GIST researchers over the years to learn what drives certain cancer cells and to:
- Find new ways to diagnose, prevent and treat them.
- Develop and test new drugs.
- Determine which treatments work for particular tumor mutations or groups of patients.
- Discover new cancer biomarkers.
- Find better ways of controlling side effects and symptoms.
But, in a rare cancer like GIST, no one sample can provide answers. A collective effort is needed.
Today, many cancer patients are asked to donate both their tissue sample and the medical information that pertains to it. The Life Raft Group’s Patient Registry and GIST Collaborative Tissue Bank have taught us that the more patient information that accompanies the sample, the more valuable the sample is to the research community. Knowing details about the sample and the patient (who remains anonymous) can help researchers understand how individual factors affect the behavior of GIST.
Tissue samples taken to diagnose GIST either at biopsy or after surgery, or from any metastatic GIST tumors removed, are saved in paraffin wax called tissue blocks. These tissue blocks are stored in the pathology department of the hospital where the tissue was removed. Only a small piece of the tissue block is needed for most research projects. The LRG tissue bank protocol applies a thoughtful process to ensure enough of the donation remains for future research.
What do you need to know?
During a medical procedure, such as an operation or biopsy, your doctor will remove the tissue needed for a complete pathology report. Then, with your consent, any leftover tissue can be sent to the LRG’s tissue bank and saved for future research.
Your tissue donation may help drive innovation. The LRG tissue bank works with the world’s leading GIST researchers in an effort to find a cure — and until then, to find ways to help increase patient survival of GIST. Patients have the option of having their tissue scanned for genetic mutations known to GIST. Part of the tissue will be used to detect the presence or absence of GIST proteins in question and to quickly determine whether a set of proteins correlates with a clinical outcome or can be used for diagnostic purposes.
For example, we used a GIST tissue microarray (TMA), which is a collection of small fragments of tumor samples from multiple patients, to quickly confirm that the novel diagnostic marker, DOG1 protein, was indeed present in the vast majority of GISTs. This is important as a diagnostic tool, since DOG1 protein is strongly expressed on the cell surface of GISTs and rarely in other soft tissue tumors. All of this information is stored in the LRG Patient Registry, a database that researchers can utilize in studies that seek to improve the effectiveness, safety and precision of future cancer diagnosis, prognosis and treatments.
The other thing you need to know is that as a tissue donor, you are in control. Federal laws and regulations protect the privacy and confidentiality of your medical information, and tissue banks must follow those rules. Your tissue donation and accompanying clinical information are stripped of any personal identification.
Is it that important to donate tissue?
Recently, while visiting the labs of LRG Research Team Member Matthew van de Rijn at Stanford University and Dr. Christopher Corless at Oregon Health & Science University, the need for tissue was driven home. Individual samples are not enough to change the landscape of GIST research, but collectively, each patient’s sample can lead to effective treatments and—potentially—a cure. Patients may not directly benefit from donating tissue, but the research on their tissue may benefit patients in the future.
Ready to become a GIST Hero?
Contact the LRG Patient Registry today: email@example.com