Fibrolamellar Tissue Repository

The Tucker Davis Fibrolamellar Research Facility at The Rockefeller University

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The Fibrolamellar Tissue Repository

Research on fibrolamellar hepatocellular carcinoma depends on the continued involvement of patients, families, and researchers alike.

Donations of fibrolamellar tissue are central to the scientific research that will improve the diagnosis, treatment, and understanding of this rare disease.

The Fibrolamellar Tissue Repository is a tissue bank for fibrolamellar samples obtained during surgery. This repository is the source of research material for The Rockefeller University and other approved academic institutions.

What is a repository?

A repository is a storage facility, made up of several deep freezers, that holds medical tissue samples.  The samples are excess material, left over after surgery.  Such samples can be invaluable for scientific research.  Fibrolamellar patients can request in advance that any tissue not needed by pathologists be donated to the repository.

Why have a repository?

Having multiple fibrolamellar tissue samples is essential for advancing knowledge of the disease.  For example, having samples allows scientists to study the differences between fibrolamellar tumors and normal liver tissue.  A robust repository will also attract new scientists to study the disease.

What has been done with the tissues so far?

The first samples of donated tissue are now being used to characterize the genomics of the disease.  Already, we are seeing that the DNA, RNA, and proteins of these samples, are, in fact, altered in fibrolamellar cells as compared to normal, adjacent cells.  We are also seeing that each fibrolamellar sample has different mutations.  We still need many more samples to discover the important “driver” mutations of this disease.

What will be done with the tissue in the future?

Tissues will be distributed only to scientists who have received authorization from their Institutional Review Boards.  Since tissue samples are rare, investigators must submit a proposal that justifies their research and use of tissue from the repository.

How do I donate my tissue?

If you are a fibrolamellar patient scheduled for surgery, please contact us beforehand.  We will work with your surgical team to have your excess tissue samples frozen and transferred to the repository at The Rockefeller University.  There is no cost to you, your doctor, or your hospital.

As a donor, what rights do I have?

You have the right to request that your unused tissue be removed from the repository at any time.  (We can either return it to you or have it destroyed.)  Upon request, we will also store a small sample of your donated tissue for you, for any future use you may envision.  If you want to keep a sample, you can consider giving another sample to a separate commercial bank for storage.  Usually, there is more than enough tissue removed during surgery.

Who runs the Fibrolamellar Tissue Repository?

The repository is run by clinicians and scientists at The Rockefeller University and is under the supervision of the University’s Institutional Review Board.  The mandate of the IRB is to ensure patient protection, privacy, and responsible research practices.  

What other resources are out there for the fibrolamellar community?

The Fibrolamellar Cancer Foundation (www.FibroFoundation.org) has been actively supporting clinical and basic research in fibrolamellar since 2008.  They are sponsoring patient activities, funding the first clinical trial for fibrolamellar, and organizing a summit of clinicians who treat fibrolamellar.

A group recently formed by patients and families called the “Fibrolamellar Registry” (www.fibroregistry.org) is organizing a patient registry—a database where patients can store all of their medical records.  Patients will be able to use this registry to easily transfer their records from one place to another. De-identified patient data will allow for population-level research.  The Fibrolamellar Tissue Repository at Rockefeller is collaborating with this group to facilitate linking patients’ records with their tumor samples.

If you have been diagnosed with fibrolamellar hepatocellular carcinoma, you may want to help researchers discover the cause and treatment for this rare disease.  Consider contributing your cancer tissue to a tissue repository developed solely for this purpose.

Facts: When you undergo a biopsy or surgery, some tissue may be left over that is not needed for diagnosis. Instead of having your doctors discard that tissue as medical waste, we ask that you consider donating it to the Fibrolamellar Tissue Repository at The Rockefeller University.  Your tissue may provide researchers with valuable clues that may lead to the cause and/or treatment of this rare disease.

How does the repository work? If you are interested in this program, let your doctor know.  Although you will not receive a monetary payment for your donation, you can find comfort in the knowledge that research conducted with your tissue may help you and future patients.

Your participation is voluntary and will not affect your care.  Please note that no extra tissue will be removed during surgery to satisfy the needs of the repository.  All research conducted with donated tissue, blood, and medical information will be performed following federal and state laws.  Your identity will be protected and your name and other identifiers such as your address, telephone numbers, etc., will not be released with your tissue, blood, or medical records.  You may request that your tissue be withdrawn from the repository at any time by informing your doctor.

For more information about the Fibrolamellar Tissue Repository, contact Prof. Sanford Simon at 212-327-8130 at The Rockefeller University or email: fibrolamellar@rockefeller.edu.

The Fibrolamellar Tissue Repository is supported by The Rockefeller University, The Fibrolamellar Cancer Foundation, and your donations.

If you would like to make a financial contribution in support of the Fibrolamellar Tissue Repository, please contact:

Ms. Maren E. Imhoff
Senior Vice President for Development
The Rockefeller University
1230 York Avenue, Box 164
New York, NY 10065
Telephone: 212-327-7711
E-mail: giving@rockefeller.edu

If you would like to make an online credit card gift, you may do so here:

http://fibrolamellar.rockefeller.edu/donate