Donating PKD affected kidneys for research

Researchers continue to make breakthroughs in in PKD research, often with the help of donated cystic kidney tissue. Polycystic kidneys retrieved for research at the time of nephrectomy (surgical removal of non-functioning kidneys) provide an opportunity for scientists to study the cells and tissues that contain the genetic mutations responsible for cyst formation.

Our PKD tissue donation program provides patients with an avenue to contribute to the advancement of our understanding of PKD. We coordinate donations of discarded human PKD kidneys to research labs across the country.

 

Why should I donate my kidney for research?

It is extremely advantageous to PKD researchers to be able to study actual PKD-affected tissue. By donating your PKD kidneys to research, you provide an opportunity for scientists to study the cells and tissues that contain the genetic mutations responsible for cyst formation, which allows them to further their 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 details about your procedure.

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 by acting as the liaison between the patient and the receiving research lab. There are no costs to the patient for tissue donation.
If your kidney(s) will be removed and you wish to donate them to PKD research, please follow these steps:

1. Advise your surgeon, nurse coordinator and anyone else at the hospital of your wish to donate.
2. Complete these two forms:

3. Contact us at 800.753.2873 or by email at research@pkdcure.org.
You must notify us and submit the forms at least two weeks before your surgery to allow time to coordinate the donation.

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).

Is tissue donation anonymous?

Yes, the patient identifiers are removed at the hospital prior to shipping the tissues to the research lab. The only information provided is age, sex, prior dialysis and/or transplant, blood urea nitrogen, creatinine levels and the gene mutation, if known. The use of human materials complies with federal regulations and is approved by the lab’s Institutional Review Board (IRB).

I have a question that isn’t answered here. How can I learn more?

Please feel free to contact us by email at research@pkdcure.org or at 800.753.2873 for more information!