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An Introduction to Tissue Banking

Help VHL Family Alliance to help scientists find ways of improving diagnosis and treatment of VHL…Contribute to a brighter future with the VHL Family Alliance tissue bank.

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A donor's story

VHL Family Alliance has teamed up with NDRI to form a new tissue bank which will help move VHL research forward, with YOUR help..

Introduction

Human tissue donation is a very special gift, but is one that you may have some questions about. Please take some time to read the information below and think carefully about whether you would like to donate tissue. If you feel you need any further information to help you reach your decision please do not hesitate to contact either VHL Family Alliance or the NDRI tissue bank to discuss the details listed below or any other questions.

Why is VHL Family Alliance moving tissue banks?

NDRI provides a service which will keep more of the kinds of tissue, blood, and urine required for the latest research.

If I’m already registered with Maryland how does this affect me?

You do not need to de-register with Maryland; you can just register with NDRI. If you’ve already donated tissue to Maryland we will be transferring it to NDRI at some point in the future.

Who are 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.

VHL Family Alliance will be working with NDRI’s Rare Disease Initiative, which is exploring new ways to help scientists find the biomaterials they need to better understand and treat so called “orphan” or rare diseases.

Why donate tissue?

We are constantly striving to increase the level of VHL research. Once considered only "an obscure medical curiosity", VHL is becoming one of the most important diseases in the study of cancer. Since the discovery that the VHL gene is mutated within the cells of clear cell renal cell carcinoma in the general population, there is increasing interest in studying VHL. The limiting factor is the availability of tissue for study. While it is estimated that there are only about 7,000 people with VHL in the United States, it is estimated that more than 25,000 people will develop clear cell renal cell carcinoma in the United States each year.

As the level of VHL research increases, the need for VHL 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 kind of study is the donated tissue used for?

• As new drugs develop, initial testing can be done using the tissue from the bank to see if the drugs are likely to be successful.
• There are currently research projects to identify biomarkers. These markers, found in blood or urine, would indicate the level of tumor activity in the body without expensive scans.

How is donation accomplished?

• When a surgery is scheduled contact should be made with an NDRI representative on the 24-hour number 877-221-6374. 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 877-221-6374. 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.

• For more detailed information on donating tissue on death please see our ‘Bereavement Information’ section below.

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. The researchers need to pass an approval process with both VHL Family Alliance and NDRI. Your identity and your family’s identity will not be disclosed to the researcher.

Does the donor or the donor’s family incur any expense for the donation?

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.

How do I become a tissue donor?

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. If you wish to donate for all 3 you will need to fill in all 3 consent forms. All 3 consent forms come with the sign-up kit. Alternatively get the forms below:

Note: You will need the Adobe Acrobat Reader to view and print these files. If you don't have it already, please click here.

• Click here to print a the basic sign-up kit with blood donor consent form (the kit includes the materials for the blood draw). You can sign up now or any time in the future.
• Click here to print a surgical donation form. You must submit this form before surgery.
• Click here to print an anatomical gifts form. You can sign up anytime or as part of your estate plan and your next of kin can give consent when you die.

Completed forms can be faxed to NDRI at 215-557-7154

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

• Request a sign-up kit contacting NDRI at 877-221-6374 ext. 251 or email bank at vhl.org. Click here to request your sign-up kit
• The kit will include materials for you to give a urine sample and have a blood sample taken by your physician. To indicate the desire to donate for research, you or your next of kin and a witness must sign and 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.
• 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 -----877-221-6374----- 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.

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 877-221-6374. Click here to get the consent forms.

Thank you for reading through these pages and considering making such a special gift to VHL research.

Contact details

Date last modified: 15-Jan-2008

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