What is the GIST Collaborative Tissue Bank?
Due to the rarity of GIST, the need for tissue samples is a priority for research. The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach leading researchers with one tissue donations. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data. This collaboration maximizes the value of donated tissue and research time.
How is the GIST Collaborative Tissue Bank different?
The Life Raft Group, which maintains the largest patient-provided clinical database in the world, has joined with cancer researchers to create a unique tissue bank, where patient tissue is linked to their routinely updated GIST clinical history. The Collaborative Tissue Bank has been designed to:
- Allow multiple researchers to share rare tissue.
- Maintain patient privacy: identifying information will be removed from tissue samples and the patient’s clinical history.
- Create a collaborative system among various institutions with the goal of expediting the communication of valuable research results and reducing duplication of effort.
- Increase research efforts within the GIST community.
How did the GIST Collaborative Tissue Bank project develop?
The LRG’s Pathway to a Cure began in 2005 when a number of patients were developed a resistant to Gleevec. It was time to discover ways to counteract the resistance. Since a traditional research and drug development process can take up to 15 years to produce new therapies, we decided to take action by forging a partnership with the research community and creating a collaborative and cooperative research effort. Our research goals were clear from the beginning: First, to turn GIST from a life-threatening disease into a chronic condition managed with medication; and second, find a cure for GIST.
Due to the rarity of GIST, one of the most urgent research needs is for tissue samples. Without samples, scientists cannot conduct basic experiments to unlock the mysteries of GIST biology and to test and find new treatments. From the beginning, the LRG recognized this need and funded both adult and pediatric tissue banks. However, even when researchers were able to acquire tissue, patient privacy regulations prevented them from having complete clinical histories of these patients and from sharing information and results with other researchers. This is complicated by the fact that patients often see multiple doctors at multiple institutions during the course of their treatment so that often no one physician or institution has a complete clinical history of that patient. Our research team came to us to see if we could find a way to overcome these research obstacles and provide the missing pieces of the research puzzle: GIST tissue linked to clinical histories.
Since our beginning, we have maintained an extensive GIST patient registry that has cut across institutional and geographical boundaries by collecting data from patients. Today, with more than 2,000 GIST patient clinical histories, it is the largest database of its kind in the world. In an effort to provide researchers with the tissue they need to further their experiments, The Life Raft Group acts as a liaison, providing both access to the patient-provided tissue samples and to the detailed clinical histories.
The key is patient submission of paraffin tissue blocks. These tissue samples are on file in the pathology labs where patients had their surgeries, and remain archived by law. Tissues are typically required to be held for five to six years, but requirements vary by state.
By having patients consent to the transfer of their paraffin tissue blocks to the LRG, we de-identify the tissue and send it to the GIST Collaborative Tissue Bank at Oregon Health & Science University (OHSU). (Tissue is de-identified without personal information to comply with research privacy regulations). Researchers requesting tissue for their studies will then have access to both GIST tissue and the associated clinical history.
This unique project allows researchers to analyze tissue in ways that have never been possible before. For example, scientists will be able to compare primary tumor tissue and metastasized tumor tissue from individual patients and then look for genetic similarities in other patients. Through The Life Raft Group’s collaborative relationships such as the LRG’s Project Surveillance and the Pediatric & SDH-Deficient GIST Consortium, researchers are invited to share their requests and their findings, bringing the project full circle.