FCF Biobank Fact Sheet 2018

Why is it important to utilize the Foundations Biobank program? How can you help?

  • Researchers need access to biospecimens such as ascites fluid, live tumor tissue, and biopsies
  • The FCF is committed to creating an open repository that grants tissue access to bona fide researchers such as those that are listed on our website fibrofoundation.org/research. FCF believes every tumor is unique and contains valuable information critical in facilitating a pathway towards a cure and unlocking potential new treatments.
  • We believe multiple types of research should be supported concurrently which is the goal of the FCF Biobank

How can I contribute to the FCF Biobank? Do I have access to my biospecimens?

  • If you have an upcoming surgery, biopsy, or paracentesis procedure (ascites collection), please contact Patty Cogswell, as far in advance as possible. FCF will help you navigate through the process and coordinate with one of our key collection partners regionally located around the country. FCF can also work with you to retrieve tissue from a previous surgery which may be stored at your treating hospital.
  • FCF can help you acquire a frozen tissue sample of at least 2 grams and have it shipped to researchers at universities who are working on specific projects utilizing this type of tissue. Again, contact Tom Stockwell, [email protected] or 760-333-2699
  • In many instances you will be able to save your stored tissue or ascites for personal use at a later time

Who stores and analyzes my biospecimens? 

  • FCF currently works with University of North Carolina (UNC) and Store My Tumor which both specialize in collecting, processing, and storing viable tumor tissue and ascites for all fibrolamellar specimens.
  • UNC is the first and only place in the country which has shown in published works to have created a fully characterized model of a patient derived xenograph (“PDX”) for fibrolamellar. A PDX is a model of cancer, where tissue or cells from a patient’s tumor are implanted into an immunodeficient mouse. The PDX at UNC was derived from the ascites fluid of Tucker Davis, the founder of FCF.
  • Your sample will be treated with the utmost care and an organoid will be produced which will then be used to develop a mouse line using the tissue that you have contributed.
  • UNC will
    • store all samples in multiple formats so that models can be generated and RNA sequencing information can be shared.
    • provide the initial key work by processing the received sample and creating usable, state of the art models. UNC or a storage center will then share this model with other key researchers located around the country, so the line may be nurtured and used for finding targeted therapies.

Who is paying for this?

  • The FCF pays for all the collection, processing and storage of your contributed specimen. In many cases you will be able to maintain a certain amount of tissue for personal use later, however this cannot be guaranteed based on the amount and viability of the sample provided. (See why would I want to make a withdrawal below)
  • If later you choose to ship some of your tissue to a facility of your choosing you will only incur the shipping charges for the applicable tissue you decide to send.

How could I use my tumor tissue if the biobank is able to successfully establish a model with it?  Here are a few examples:

  • Personalized Cancer Vaccine. A type of immunotherapy that directs your own immune system to recognize unique markers on your tumor and then awaken it to fight the cancer cells. This requires live viable cells.
  • Tumor-Infiltrating Lymphocytes. This is another form of immunotherapy that harnesses the killer T-cells which recognize the tumor, expands them in the lab and then infuses billions of them back into the body giving your immune system a chance to fight the cancer cells with little to no side effects.
  • Chemo-Sensitivity Testing. Allows your tumor to be tested for which ever chemotherapy may be most advantageous, and which one may be the most toxic.
  • Genetic-Sequencing. This process identifies unique markers on your tumor to help your oncologists target the cancer cells more precisely while sparing healthy cells.
  • Cancer stem cell therapy.
  • To take advantage of your stored tissue for any of the above purposes, make sure your medical team knows if you have stored tissue.

Your hospital needs to be a partner in this initiative.

  • Your medical team needs to confirm the pathology of your sample and typically save a small amount of tissue.
  • FCF will provide a turn key biospecimen kit to you or your hospital prior to your procedure to make the collection as simple as possible.
  • Should your hospital have any questions at all, the FCF Patient Navigator, Tom Stockwell, is available to answer their questions and guide the process.

What is the process?

  • Before the surgery you will be contacted first by phone and then emailed forms to sign. You will be shipped a collection kit to provide to your medical team either in advance or the day of the procedure.
  • During the surgery, the kit contains instructions for your medical team on how to collect and pack the tumor contents. The package is sent to the pathology department and is processed and shipped immediately to UNC or a specified regional collection facility. Time is of the essence as the facility needs to receive the tissue within 12-24 hours after surgery.
  • After surgery UNC or its partners will process the tumor in multiple formats, freeze and store it viably (alive). Shortly after the tumor is received by UNC or a regional facility you will receive a final confirmation of its receipt. If enough tissue remains a small portion may be selected to participate in a complete RNA sequencing which can potentially aid with treatment ideas.
  • Your sample will be screened for pathogens. Once your organoids are established, FCF ships a sample to a third party for screening of various viruses and other pathogens. This information is important to the investigators handling the samples. You will have an option to have your physician be notified if something should show up in this routine screening.



Please help us help you!

Contact Tom Stockwell, Patient Navigator at [email protected],
or 760-333-2699.