Tissue Banking for a Cure

by Alexandra Lewis

VHLFA is very excited to launch our new tissue bank at the National Disease Research Interchange (NDRI). The tissue bank will store an expanded range of human biomaterials, including blood, urine and saliva to put VHL at the forefront of the latest research. Some researchers have already signed up to use the bank, and more are expected soon, so now we need your help with donating tissue to the bank.

As the VHL gene has become more prominent than ever before in cancer research, the necessity for biomaterials has increased. Researchers from the Renal SPORE at the Dana-Farber/ Harvard Cancer Center need VHL tissue for their research into kidney cancer. Blood and urine are also crucial for research into identifying biomarkers – chemicals found in the blood or urine which would indicate the level of tumor activity in the body without expensive scans. New drugs require tissue to test them on.

A larger collection of biomaterials and their related medical records is essential to prevent research into VHL and other cancers from being slowed. The new tissue bank is the vehicle to ensure that research to better understand, treat and find a cure for VHL takes place. NDRI is a non-profit with 25 years experience in obtaining, storing and distributing human cells, tissues and organs to researchers and scientists. NDRI receives funding from the National Institute of Health towards their Rare Disease Initiative of which we are now a member. This project seeks to provide researchers with the appropriate materials to gain insight into rare diseases.

Donating to the Tissue Bank need not be a hassle. Contributors can choose whatever type of donation they feel comfortable with. The first donation option is to give blood and urine samples, this can be done at any time, regardless of whether you have surgery planned or not. All you have to do is request a sign-up kit and fill in a consent form. Next, you need to get less than an ounce of blood drawn from your local doctor and then send your samples back to NDRI in a postage-paid envelope.

“From there, we have called to notify the tissue bank of upcoming surgeries. During the call, we provide contact telephone and fax numbers to the surgeon’s office and surgery site hospital to the tissue bank. The telephone calls average the same five minutes for each surgery.

“Then, before going into surgery, we make sure the nurse and admitting staff are reminded a tissue donation from the surgery has been set up just as a courtesy (perhaps the left hand doesn’t know what the right hand is doing. Give these guys some credit--a hospital is a busy facility).  Each time the donation has been confirmed immediately, and off to surgery I go.

“I understand there may be some concern about taking more tissue than is necessary.  That is not how this works--what your doctor plans to take from your body is all that is taken.  Samples are shared of the specimen that is harvested--no additional tissue is taken or required. 

“I cannot encourage other VHL patients enough to allow tissue donation--it may save lives of the generations ahead of us--and we can be part of that--how wonderful is that!”

There are two options for registering with the tissue bank to donate during surgery. You can either fill in a consent form in advance of having surgery scheduled, like Frank did, or once you have a date for surgery. As Frank did, you will need to send the form back to NDRI and give them details of upcoming surgeries. They will sort out the rest. Diane M. echoes Frank’s experiences:

“My name is Diane, I am 30 years old I, live in Connecticut, and have been living with VHL in my life.   “On February 28 th 2006 I had surgery on my cervical spine. I have lost count of how many surgeries I’ve had, but one thing I always remember to do is to donate my tumors/cysts to the tissue bank. It’s so incredibly easy, all I had to do is complete a couple of forms and the rest was done by the doctors and the tissue bank. By donating these tumors and cysts, I am helping researchers in our pursuit to find a cure. I strongly urge everyone to do the same.”

Diane M., Connecticut

The final type of donation to consider is when a loved one passes away. If you or a family member feels strongly that this what you would like to do, then a consent form can be filled out at any time and sent back to NDRI. When the time comes your family will need to contact NDRI, who are very respectful towards the donor families’ wishes regarding funeral arrangements. If a family member passes without signing a consent form but their family feels they would have wanted to be a donor, the family can sign the consent form.

All types of donation are at NO COST to the donor, except the cost of the blood draw if you would like to donate blood. The process has been set-up to be as simple and sensitive to donor and donor families needs as possible. NDRI is available 24 hours a day to fulfill your requirements. Tissue that was donated to our previous Tissue Bank in Maryland will be moved to NDRI in due course.

We are enthusiastic that moving our Tissue Bank to NDRI will lead to many new developments in VHL research. We really appreciate you taking the time to read this article and consider donating to the bank.

To sign up for tissue donation contact the Rare Disease Coordinator at the NDRI at 1-877-221-6374, or bank@vhl.org . For other questions, contact the VHL Family Alliance hotline at 1-800-767-4845 or alex@vhl.org.

As printed in the VHL Family Forum 14:2, August/September 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.