Tissue donation

Discarded human tissue is an invaluable research tool. Researchers have made significant breakthroughs in recent years with the help of donated kidneys that have come from PKD patients who have had their kidneys removed through a surgical procedure known as a nephrectomy.

Our tissue donation program provides patients with an avenue to contribute to the advancement of our understanding of PKD. We coordinate donations of discarded PKD kidneys to research labs across the country. In the last fiscal year (July 2013-June 2014), we contacted researchers on behalf of 15 patients hoping to donate their kidneys.

Why should I donate my kidney for research?

It is extremely advantageous to PKD researchers to be able to study actual PKD-affected tissue from living donors. By donating your discarded kidneys to research, you provide an opportunity for scientists to study the cells and tissues that harbor the genetic mutations responsible for cyst formation, which allows them to continue work toward finding treatments and a cure for PKD. Tissue donation is anonymous; patient identifiers are removed at the hospital prior to shipping the tissues to the lab. The only information provided about the patient is age, gender, prior dialysis and/or transplant status, blood urea nitrogen, creatinine levels and the gene mutation, if known.

How do I donate my PKD kidneys for research?

PKD kidneys are retrieved by participating hospitals at the request and consent of the patient. We facilitate the retrieval of the kidneys and serves as a liaison between the patient and the core facility. There are no costs to the patient for tissue donation. Patients can obtain additional information on tissue donation online or by calling 1.800.PKD.CURE (753.2873).

Unfortunately, my loved one with PKD is in failing health. How can we arrange for his/her kidneys to be donated to research after their death?

The anatomy department of your state university may be able to accept the kidneys, so you should contact them directly. Another option is the National Disease Research Interchange.

I want to donate my healthy kidney to someone with PKD. How do I arrange that?

If you are interested in giving the generous gift of one of your healthy kidneys to someone in need, you can learn more from the United Network for Organ Sharing (UNOS) or call us at 1.800.PKD.CURE (753.2873).

One of the labs that receives tissue is the PKD Research Biomaterials and Cellular Models Core at the University of Kansas Medical Center. We fund this lab, along with two other core labs. Biomaterials from the lab are provided to other requesting research labs at no cost to support PKD-related research.