The patient’s dilemma: Where should I donate my GIST tissue?

The fact is GIST is a rare disease and as a result researchers simply do not have enough GIST tissue samples to do the research needed to find a cure. “Too many people are still dying because we do not have a complete understanding of the disease, the causes of resistance or how to overcome it,” exclaimed Dr. Matt van de Rijn and Dr. Rob West of Stanford University School of Medicine, “Individual researchers at single universities just cannot get enough GIST tissue samples from patients at those institutions.” Many patients are aware that their tissue is vital to research, but they often face the dilemma of how or where to donate their tissue. Patients are pulled in many directions, often solicited by multiple researchers and institutions. It’s difficult to have to choose between a hospital where one receives clinical care and a renowned scientist at another research institution. Patients are not always aware that their donated tissue will likely not be shared between institutions. That could mean having to choose between different expert researchers.

On the other side of the fence, individual researchers often have access to very small numbers of samples and these are usually not associated with detailed clinical information. Competition and a reluctance to share, extend beyond the tissue to the resulting scientific data as well, so key findings can take years to reach scientists, a loss of precious time in the hunt for a cure.

With no system in place to share tissue or data, link clinical histories or coordinate research efforts, what can patients and researchers do to ensure that precious GIST tissue will be put to the best use possible? In a word, collaborate.

Twelve of the world’s leading GIST scientists have done just that.

Recently, they joined together with the Life Raft Group to design a system that allows for timely, coordinated and effective tissue dissemination and data sharing. Aptly named the GIST Collaborative Tissue Bank, it is a true partnership between the patients whose lives are at stake and the researchers who have dedicated their lives to finding a cure.

Dr. van de Rijn, project leader of the GIST Collaborative Tissue Bank explained, “This is a unique opportunity to establish a tissue bank of GIST samples with associated detailed clinical information. The GIST Collaborative Tissue Bank would link the extensive databank that has been maintained by the LRG of clinical data volunteered by their patient members, with the research initiatives that are performed by the members of the research team.” Dr. Jonathan Fletcher, a world-renowned GIST expert at Brigham & Women’s Hospital, and a tissue bank member agrees, “The GIST Collaborative Tissue Bank will support and maximize a wide range of research opportunities and will enhance the collaborations among the group of researchers supported by the Life Raft Group and with researchers outside this consortium. This tissue bank will permit research teams, in unprecedented manner, to evaluate drug targets and drug resistance mechanisms in large numbers of GISTs.”

One of the keys to designing a system that would promote tissue sharing is the use of paraffin-based tissue, as opposed to fresh frozen tissue. According to Dr. Fletcher, “The availability of fresh frozen material has (and always will be) a major limiting factor in many studies and the hope is that the existence of a tissue bank that contains many samples of paraffin-embedded material may allow researchers to study many more cases.” As Dr. van de Rijn notes, “while only some tissue samples are frozen and maintained by a small number of academic institutions, all surgical specimens are preserved as paraffin blocks,” making them easier to obtain throughout a patient’s treatment. Because paraffin blocks do not require special storing or handling conditions—as is the case with frozen tissue— Dr. van de Rijn considers it to be a very efficient way of sharing samples with other researchers and “ideal” for research. Dr. van de Rijn emphasized how vital it is to obtain as many samples as possible.

Under the GIST Collaborative Tissue Bank system, patients would request that the hospitals where they had surgery send paraffin blocks from these surgical procedures to the LRG. There the specimens will be de-identified and labeled with a code that allows the specimen to be linked with clinical information without revealing the identity of the patient. This enables the researcher to access critical patient information without violating federal privacy regulations.

Subsequently, the paraffin blocks will be sent to Drs. van de Rijn and West at Stanford University where small core samples of material will be removed from each block for dissemination to researchers and for storage at Stanford. The tissue blocks will then be returned to the hospital pathology departments. The data obtained from studies conducted by the researchers who receive tissue through the GIST Collaborative Tissue Bank will be correlated and linked to the patient’s clinical outcome data and other data regarding the treatment of the patient to investigate many issues related to finding a curing including identifying novel therapeutic targets. Stanford University’s TMA website will serve as the data host.

The GIST Collaborative Tissue Bank has thus created a true win/win situation for patients and researchers. It has been designed to maximize the use of rare tissue for researchers through a system of sharing and yet preserve the vital tissue for future use by the patient— meeting everyone’s needs. Researchers can now cease competing for tissue and instead collaborate on productive scientific investigation. It relieves patients of having to agonize over which researcher or institution to donate tissue to, so that one donation will now reach the world’s leading scientists. Patients gain peace of mind that their tissue will be used effectively and efficiently in a multiple of scientific studies at the same time, expediting the search for a cure.

“Being able to do something to help find a cure for my disease gives me hope that a cure will be found faster,” says Anne Pacifico, one of the first GIST patients to donate tissue to the project. “I’d much rather that my tissue is put to good use by scientists than just sit in a file. Research is our best hope and I want to be part of it.” Dr. van de Rijn and Dr. West concur with Anne, “We recognize that being able to combine tissue, clinical data and broad expertise of researchers is extremely valuable in the search for a cure. Although we cannot predict the future, we expect to accelerate scientific breakthroughs and treatment developments.”

How you can contribute GIST tissue to research to help find a cure

Click here to view a webcast given by Drs. van de Rijn and West on the GIST Collaborative Tissue Bank.