Fibrolamellar

The Fibrolamellar Tissue Repository

Research on fibrolamellar hepatocellular carcinoma depends on the continued involvement of patients, their families, and researchers alike. Donations of fibrolamellar tissue and blood samples are central to the scientific research that will improve the diagnosis, treatment, and understanding of this rare disease.

The Fibrolamellar Tissue Repository, located at The Rockefeller University in a room known as the Tucker Davis Fibrolamellar Research Facility, is a tissue bank for fibrolamellar samples obtained during surgery. We also store blood and other samples from fibrolamellar patients.

When you undergo a biopsy or surgery, there is usually more tissue removed than is needed for diagnosis. Unless you instruct your doctors otherwise, this tissue will be discarded as medical waste. Instead, we ask that you consider donating any tissue not needed by your medical team to the Fibrolamellar Tissue Repository. If you are willing to donate fresh tissue, arrangements must be made in advance of surgery. Frozen or fixed samples can be donated after surgery. The Repository is a source of research material for scientists at The Rockefeller University and other approved academic institutions. Donated tissue may provide researchers with valuable clues that could help them better understand and more effectively treat this rare cancer. 

What is a repository?

A repository is a storage facility of freezers to hold medical tissue and blood samples. The samples are excess material, left over after surgery. Such samples can be invaluable for scientific research.

Why have a repository?

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

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 (IRB). The mandate of the IRB is to ensure patient protection, privacy, and responsible research practices.

Who will have access to the donated tissue and blood?

Tissue and blood will be distributed only to scientists at Rockefeller University and other approved institutions who have received authorization from their respective Institutional Review Boards. Because tissue samples are rare, investigators must submit a request that justifies their proposed research and use of tissue from the Repository.

What has been accomplished with the tissues so far?

The first samples of donated tissue were used by Professor Sanford M. Simon and his research colleagues to characterize the genomics of fibrolamellar. The scientists found that, in the primary tumor, there was only one alteration in the DNA–a deletion in a small piece of one copy of one chromosome. They found this deletion in every tumor sample examined. This produces a fusion of two genes that makes a chimera. As a consequence of this alteration, there are then thousands of changes in the RNA and the proteins in the tumor cells in contrast to the adjacent normal liver.

What will be done with donated tissue and blood in the future?

Researchers continue to need donations of tissue that can be used to test various approaches to therapies. Additionally, for development of a blood test for fibrolamellar, investigators need donations of small amounts of tissue and blood from as many different patients as possible. (The donation procedures can be done in a physician’s office, and the Fibrolamellar Tissue Repository can send instructions and materials directly to your physician.)

As a tissue and/or blood donor, what rights do I have?

Although you will not receive a monetary payment for your donation of tissue or blood samples, you can find comfort in the knowledge that research conducted with your tissue and blood samples 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 Fibrolamellar Tissue Repository. All research conducted with donated tissue and blood will be performed following federal and state laws. Your identity will be protected, and your name and other identifiers, such as address and telephone numbers, will not be released to scientists accessing your tissue. Donors of tissue and blood samples have the right to request that their unused tissue or blood be removed from the Fibrolamellar Tissue Repository at any time by informing the research team at The Rockefeller University. (We can either return the samples to you or have them destroyed.) Also, should a donor wish to retain a tissue sample that is not designated for research, he or she might consider giving an additional sample to a commercial tissue storage bank. Usually, more than enough tissue is removed during surgery to accomplish this purpose.

How do I donate my tissue?

If you are a fibrolamellar patient scheduled for surgery and you wish to donate tissue samples to the Fibrolamellar Tissue Repository at The Rockefeller University, please let your physician know and contact the Repository, preferably prior to the surgery. We will work with your physician and surgical team to have excess tissue samples frozen and transferred to the Repository. There is no cost to you, your doctor, or your hospital. If you are willing to donate blood, please contact us and we will work with you to facilitate the donation.

What other resources are available to the fibrolamellar community?

A group of fibrolamellar patients and their families recently formed the Fibrolamellar Registry (www.fibroregistry.org) to organize a patient registry—a database where patients can store all their medical records. Currently patients can self-report their medical data. Soon patients will be able to use this registry as a medical records storage site. If you wish, you can allow your de-identified data to be used for population-level research. The Fibrolamellar Tissue Repository at Rockefeller has begun collaborating with this group to facilitate linking patients’ records with their tumor samples.

The Fibrolamellar Cancer Foundation (www.fibrofoundation.org) has been supporting clinical and basic research on fibrolamellar since 2008. They also sponsor patient activities.

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

Philanthropic Support

The Fibrolamellar Tissue Repository is supported by The Rockefeller University and by philanthropic gifts from individuals and private foundations. The University is grateful to the Fibrolamellar Cancer Foundation for a grant to support the purchase of a freezer for storage of fibrolamellar tissue samples. The University is also grateful to the Sohn Conference Foundation for a grant to purchase microscopes, for documenting and studying tissue, and funds to analyze the samples.

In addition, The Rockefeller University thanks the many dozens of patients and family members who have provided so much of the support for this research.

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

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

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

http://fibrolamellar.rockefeller.edu/donate