tissue-bank

Who can participate in the GIST Collaborative Tissue Bank project?

Any Life Raft Group member, who is a patient, may participate in this project. If you have not previously participated in the LRG Patient Registry, we will ask that you 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 previously been tested.
  • Compare mutational analysis with patient’s clinical history to better understand the patient’s current situation.
  • Advise patients to discuss treatment options with their doctors based on their mutational analysis results.
  • Advocate for proper treatment based on mutational statistical analysis findings.
  • Raise awareness of the importance of mutational analysis.

What am I being asked to do?

To help with GIST research, you can do one of two things. Please read the following carefully.

1. Have mutational testing and donate tissue & GIST clinical history:

(Testing will be billed to your insurance – U.S. patients only. Individual health insurance coverage varies.)

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

  • Patient Registry Questionnaire: to participate in this program, it is necessary for you to enroll in the Life Raft Group Patient Registry.
  • Signed IRB consent form.
  • Medical History: Your medical history is very important to researchers since through it they can associate your clinical data to the results of mutational testing, enabling them to perform statistical studies and provide better treatment recommendations and courses of action.
  • Form A: Patient authorization to donate tissue sample for research and mutational testing.
  • 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 confirms that the sample sent corresponds to the patient’s GIST diagnosis.
  • Requisition Form: To be completed and signed by your physician requesting the mutational analysis

2. Donate tissue to the GIST Collaborative Tissue Bank (no mutational analysis performed):

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

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

  • Patient Registry Questionnaire: to participate in this program, it is necessary for you to enroll in the Life Raft Group GIST Patient Registry Online.
  • Signed IRB consent form.
  • Medical History: Your medical history is very important to researchers since through it they can associate your clinical data to the results of mutational testing, enabling them to perform statistical studies and provide better treatment recommendations and courses of action.
  • Form A: Patient authorization to donate tissue sample for research.
  • Copy of the Pathology Report: This report confirms that the sample sent corresponds to the patient’s GIST diagnosis.

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

Once the Life Raft Group has received the required consent forms, the Patient Registry Department either have the tissue sample tested for mutational analysis or sent directly to Oregon Health & Science University (OSHU) to become part of our tissue repository. The patient’s name and personal information will be replaced by a unique numeric identifier that will be associated with the corresponding GIST clinical history in the LRG GIST 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 study, 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 stored, unless needed for research or diagnostic purposes.

By law, tissue samples must be stored at the medical facility where the surgery was performed; the duration of storage is specified by state law. After the mandatory storage period is over, 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 that is 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 participate 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 researchers can conduct mutational testing on the samples as well. All of the de-identified data generated from these studies will be available to be shared with researchers.

Donated tissue samples reach the world’s leading GIST scientists 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 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 is an ongoing research study. There is currently no time limit and you can submit samples from new surgeries and continue to update your Patient Registry medical records 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.

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, GIST 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?

Please 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.

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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