Promoting Research

A Precious Gift that Doesn’t Cost a Cent

The Powerful Patient #8

Nechama and Ashira on her first day of school, 2001.

How can you get doctors to study the condition that plagues you? Is there anything an ordinary person can do to promote research?

We talk in this show with another distinguished mother whose passion for helping improve her child’s life has improved the life and outlook of countless people in the United States and the world.

Lee Ducat founded the Juvenile Diabetes Foundation in 1970, to raise awareness of juvenile diabetes, raise money for research, and help her son and others manage their health.

But a greater challenge remained – how to get scientists to do research that would lead to medicines for diabetes – not just insulin, but even better ways to manage blood sugar and prevent the many life-threatening complications of diabetes, and ultimately to find a cure. The scientists needed human tissue to really make progress on this research.

Lee set out to plug this hole – to educate people as to the benefits of donating tissue for research, and then to work out a process that would transfer fresh tissue to the researchers quickly and efficiently, carefully preserved according to the requirements of the project, so that the tissue would be maximally usable for research.

Today the National Disease Research Interchange, founded by Lee and others in 1980, serves as a middleman between the patient and their local hospital on the one hand, and the researcher in the lab on the other.

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Program guide for this show

Our Guest

Lee Ducat, Founder and First President of the Juvenile Diabetes Foundation (1970) and subsequently Founder and President of the National Disease Research Interchange (1980) in Philadelphia, and winner in 2007 of a gold medal as a Distinguished Daughter of Pennsylvania.

More about the Juvenile Diabetes Foundation

Now the Juvenile Diabetes Research Foundation International (http://www.jdrf.org), the JDRF provides information and support, and funds research into Juvenile Diabetes.

Why Donate Tissue?

You can promote research on the condition that affects you. Even if there is no researcher immediately available who is looking for such tissue, you can put it into the “bank” at NDRI, to be made available for future approved projects.
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)
tissue removed during any surgical procedure, or excess tissue at a birth
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 disease or 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 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. The first concern is always the health of the patient and the success of the medical procedure.

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 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 their own institution’s Internal Review Board (IRB) and the 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?

Request a sign-up kit contacting NDRI at 800-222-6374.
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 -----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.

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.