Join Our Tissue Bank

/Join Our Tissue Bank
Join Our Tissue Bank 2018-06-05T10:23:59+00:00

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Why a GIST Collaborative Tissue Bank?

Due to the rarity of GIST, one of the most urgent research needs is for tissue samples. The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach the world’s leading GIST research scientists with one tissue donation, maximizing both tissue and precious research time. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data.

How is the GIST Collaborative Tissue Bank different?

The Life Raft Group maintains the largest patient-provided clinical database in the world and has joined with cancer researchers to create a one-of-a-kind tissue bank, where patient tissue is linked to their GIST clinical histories. The GIST 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 patient clinical histories.
  • Create a system for researchers to share data, thereby speeding up communication of vital results and reducing duplication of efforts. Stanford University hosts the shared data generated by the researchers and links to the LRG Patient Registry.

Who can participate in the GIST Collaborative Tissue Bank project?

Any LRG patient member may participate in this project. If you have not previously participated in the LRG Patient Registry, we will ask you to provide your clinical history and quarterly medical updates.

How are we currently using the GIST Tissue Bank?

  • Facilitate mutational testing for patients who have not already had them.
  • Compare mutational analysis with clinical history to better understand the patient’s current situation.
  • Advocate for treatment based on mutational statistical analysis findings
  • Advise patients to discuss treatment options with their doctors based on mutational analysis results
  • Raise awareness of importance of mutational analysis
  • Provide LRG Research Team tissue samples from specific GIST patients based on analysis criteria
  • LRG researchers regularly collaborate with each other and borrow tissue between as needed for their work.

What am I being asked to do?

To have mutational testing and donate tissue:

(Testing will be billed to your insurance – U.S. patients only)

Please complete and provide the LRG with the following forms:*

  • Registry Form: to participate in this program, it is necessary for you to enroll in the Life Raft Group Patient Registry.
  • IRB consent form signed by you.
  • Medical History: Your medical history is very important to researchers, since through it, they can associate your data to the results of mutational testing, thus enabling them to perform statistical studies.
  • Form A: Patient authorization to send his/her tissue sample for research.
  • Form B: By signing this form, the patient gives authorization to send the results of the study to his/her attending physician.
  • Copy of the Pathology Report: This report guarantees that the sample sent corresponds to a GIST.
  • Requisition Form: To be completed and signed by your physician requesting for the mutational analysis

To simply donate tissue to the GIST Collaborative Tissue Bank (no mutational analysis):

There is no cost to donate (open for all patients)

Please complete and provide the LRG with the following forms*:

  • Registry Form: to participate in this program, it is necessary for you to enroll in the Life Raft Group Patient Registry.
  • IRB consent form signed by you.
  • Medical History: Your medical history is very important to researchers, since through it, they can associate your data to the results of mutational testing, thus enabling them to perform statistical studies.
  • Form A: It is the patient authorization to send his/her tissue sample for research.
  • Form B: By signing this form, the patient gives authorization to send the results of the study to his/her attending physician.
  • Copy of the Pathology Report: This report guarantees that the sample sent corresponds to a GIST.

*Forms can be mailed upon request. Please contact liferaft@liferaftgroup.org

Once the Life Raft Group has received all consent forms needed, the LRG staff will begin the process of either having it tested for mutational analysis or sent directly to Stanford University to become part of our tissue repository. The name of the patient and his/her personal information shall be replaced by a unique numeric identifier associated with his/her GIST clinical history in the LRG Patient Registry.

What is a Paraffin Tissue Block and how is this different from frozen tissue?

Both fresh frozen and paraffin tissue samples are utilized for a broad range of research studies. For this particular project, we are asking only for paraffin-based samples. Tissue samples are routinely taken during surgery for review and evaluation by pathologists. These tissues are fixed in formalin, processed to remove water, and then infused with molten paraffin wax. These tissue blocks are then filed, unless needed for research or diagnostic purposes.

By law, these samples must be retained on file at the medical facility where the surgery was performed; the duration of storage is specified by state law. After the mandatory storage period, samples may be destroyed and lost forever to researchers. Paraffin tissue blocks are relatively easy to store and ship, and remain viable for research for a long period of time. Recent advancements in research technology have resulted in new and exciting methods of using paraffin tissue blocks making them an extremely valuable resource for researchers.

Paraffin block tissue is different from fresh frozen tissue samples also used by researchers. Fresh tissue samples must be frozen immediately after surgery, remain frozen during shipping and then stored in special freezers to remain viable for research purposes.

Who is studying my tissue?

The GIST Collaborative Tissue Bank members collaborate in a number of cross-cutting studies. They also conduct a variety of experiments, including state-of-the-art tissue microarrays (TMA). TMAs examine the expression levels of genes or antibodies and allow comparisons of up to 500 tumor samples at one time. Other members of the research team conduct mutational testing on the samples. All of the data generated from the studies will be shared by the entire team.

GIST Collaborative Tissue Bank researchers include:

  • Dr. Sebastian Bauer, West German Cancer Center, University of Essen, Germany
  • Dr. Chris Corless, Oregon Health & Science University
  • Dr. Maria Debiec-Rychter, The Catholic University of Leuven, Belgium
  • Dr. Anette Duensing, University of Pittsburgh Cancer Center
  • Dr. Jonathan Fletcher, Brigham & Women’s Hospital
  • Dr. Michael Heinrich, Oregon Health & Science University
  • Dr. Brian Rubin, The Cleveland Clinic
  • Dr. Tamas Ordog, The Mayo Clinic
  • Dr. Matt Van de Rijn, Stanford University Medical Center

Donated tissue samples reach the world’s leading GIST scientists, including those listed above, making it a more efficient use of both the rare GIST tissue and precious research time. A scientific committee will also review requests by GIST scientists who are not members of the GIST Collaborative Tissue Bank to share the tissue and data. Our ultimate goal is to accelerate the speed at which lab research is conducted and the time it takes to translate these research findings into new GIST treatments.

How long will the study last?

This will be an ongoing study. There is currently no time limit and you can submit samples from new surgeries and continue to update your medical record so that researchers have access to each patient’s latest clinical progress.

I have already donated my tissue to a research facility. Will this overlap with other studies?

Yes, but we are taking this study a few steps further. The GIST Collaborative Tissue Bank is a unique collaborative and coordinated research effort, offering researchers and patients the opportunity to partner in an unprecedented way. LRG Patient Registry data matched to GIST tissue samples will allow researchers to go beyond the scope of many research studies. Additionally, sharing data through the Stanford TMA website will allow more GIST researchers to access vital and timely information benefiting all GIST research labs worldwide.

How will my personal information be protected?

The LRG removes all personal information from patient records, pathology reports and tissue samples. Through a sophisticated data sharing and coding process that is IRB approved, Collaborative Tissue Bank members are able to access and correlate the de-identified patient clinical histories and the matching tissue samples and pathology reports.

Will it cost me anything to participate in the study?

There is no cost for donating tissue. Some hospitals may charge a modest cost for providing a copy of the pathology report or the tissue sample. If you are located outside the United States you may incur courier or postal service costs for mailing the sample from your country.

If mutational analysis is being performed and facilitated through the Life Raft Group, this test will be billed to your insurance. Depending on your insurance plan, there may be additional costs. Please check with your insurance provider for more information.

Where should I send my tissue samples?

Request that the Pathology Department send the tissue samples and reports directly to the GIST Collaborative Tissue Bank:

GIST Collaborative Tissue Bank 
c/o The Life Raft Group
155 Rt. 46W, Suite 202
Wayne, NJ 07470

For additional questions please contact the LRG at:

973-837-9092 OR liferaft@liferaftgroup.org

Will my samples be returned?

We will honor requests by medical facilities to return the samples.

A free Life Raft Group membership is required to participate in the GIST Tissue Bank.

Become an LRG Member

If you are already an LRG member, please fill out our Tissue Bank application.

Tissue Bank Application

Contact our Patient Registry Director, Denisse Montoya, if you have questions.

Next Steps:

If you are already an LRG Member
Update Your Medical History

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