Tissue Bank for HLRCC Research

Human tissue donation is a very special gift that helps scientists find ways of improving diagnosis and treatment of HLRCC. Please consider this gift and helping the HLRCC Family Alliance c/o VHL Family Alliance work towards a brighter future with the HLRCC and VHL patients.

There is no financial cost to the family for donation to research. If you donate blood, you may incur a modest charge from your local doctor or hospital to have the blood drawn. In the case of death, the family is responsible for regular funeral/mortuary or cremation expenses.

Why donate tissue?

We are constantly striving to enhance HLRCC research. Once considered only “an obscure medical curiosity”, HLRCC is becoming one of the most important diseases in the study of cancer. Since the discovery that the HLRCC gene is mutated within the cells in many forms of cancer including clear cell renal cell carcinoma, breast, colon, etc. in the general population, there is increasing interest in studying HLRCC. The limiting factor is the availability of tissue for study.

As the level of HLRCC research increases, the need for HLRCC tissue for research also increases. Scientists depend on research donors supplying different types of human tissues and organs for their studies, such as… blood and urine samples (with accompanying medical history) discarded surgical specimens tissues and organs donated after death

What happens to the tissue I donate?

The tissue will be stored in the tissue bank. Researchers will have to apply for tissue to be used for specific projects after approval is obtained from both the HLRCC Family Alliance c/o VHL Family Alliance and NDRI. Your identity and your family’s identity will not be disclosed to the researcher.

How to Donate Tissue

Please note there are 3 different types of donation, each with a different consent form; donation of a blood, urine or saliva sample, donation of tissue during surgery and donation of tissue on death. NDRI will overnight the forms to you.

Follow the steps below to pre-register to become a donor.

Request a sign-up kit contacting NDRI at 800-222-6374 or email: bank@vhl.org

The kit will include materials for you to indicate your desire to donate surgically removed tissue for research. You or your next of kin and a witness must sign two copies of the enclosed consent forms. You or your family member should retain one copy, and the other should be mailed to NDRI. You will also need to fill out and mail to NDRI the medical questionnaire. All information will be kept in the strictest confidence, and identifying information will be removed before this information is shared with any researchers.

Return the completed sign-up kit to:
Rare Disease Coordinator
National Disease Research Interchange
1628 JFK Blvd.
8 Penn Center, Suite 800
Philadelphia, PA 19103
Fax #: 215-557-7154

Make sure your loved ones, doctors, care givers and attorney are aware of your registration with NDRI. Designate one person as a contact for NDRI. Keep the NDRI 24 hour number —–800-222-6374—– handy. As soon as you know when you are going to have surgery, call NDRI with the name and contact details of the surgeon and the date of surgery. NDRI will then handle further details of the specific tissue donation. In the event of your death or the death of your loved one, as soon as death occurs or is imminent, your designated contact should get in touch with NDRI.

When a surgery is scheduled contact should be made with an NDRI representative on the 24-hour number 800-222-6374. If you are having surgery to remove a tumor, a small portion of the tissue removed will be donated to the tissue bank. No additional tissue is taken for research.

In the event of death, or if death is imminent NDRI should be contacted as soon as possible on the 24-hour number 800-222-6374. NDRI will work with your family members, funeral director, hospital or nursing home staff to arrange for the transfer of the body, if applicable, and for the tissue recovery at an appropriate location. Recovery of tissues and organs may be performed at your local hospital, funeral home, or other designated establishment. The removal of tissue is very respectful; and the body can be made available for a timely funeral after donation. A traditional, open-casket funeral service can still take place. The physical appearance of the donor is unchanged.

Even if you are not already pre-registered, but an emergency situation arises and you wish to donate either as a result of surgery or death, arrangements can be made by contacting the NDRI Tissue Bank at 800-222-6374.

HLRCC Tissue Banking Outside the United States

Please contact the primary research project in your country. There are strict laws about sending blood and tissue across country borders. In most cases tissue will be stored within your own country, to facilitate the research projects there.

Canadians can contribute to the US bank. Please contact NDRI at 800-222-6374 or email: bank@vhl.org

Europeans are still constrained to donate within country. There are efforts to make a single banking effort for all of the European Union. Meanwhile please contact the nearest Clinical Care Center. Also, please contact HLRCC Family Alliance for information, or email to hlrcc@vhl.org

Click here for the list of Clinical Care Centers for VHL, worldwide. The same list applies to HLRCC

What is NDRI?

The National Disease Research Interchange (NDRI) was founded in 1980 by its president, Lee Ducat, a Philadelphia mother of a diabetic child. As a non- profit corporation funded primarily by the National Institutes of Health, NDRI is dedicated to the procurement, preservation, and distribution of human cells, tissues, and organs to researchers studying over 100 diseases.

National Disease Research Interchange (NDRI)
8 Penn Center, Suite 800
1628 JFK Boulevard
Philadelphia, PA 19103
www.ndriresource.org
e-mail: raredisease@ndriresource.org
(800) 222-6374 (24 hours a day)
or +1 (215) 557-7361
Fax: +1 (215) 557-7154

Copyright © 2004 - 2017 Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC)Family Alliance
c/o VHL Alliance, 1208 VFW Parkway // Suite 303, Boston, MA 02132
+1-617-277-5667 ext. 3 or +1-800-767-4845, ext. 3 hlrcc@vhl.org

Last modified: April 26 2016 19:30:20.