Donating PKD-affected kidneys for research

Researchers have made significant breakthroughs in recent years with the help of donated PKD kidneys. Discarded human tissue is an invaluable research tool. 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 harbor the genetic mutations responsible for cyst formation. Our PKD tissue retrieval program provides patients or their families 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. Since January 2012, we have contacted PKD investigators on behalf of 18 PKD patients for potential kidney donations. This program has been ongoing since 2003, with approximately $5,000-$10,000 invested each year ($100,000 total).

If your kidney(s) will be removed and you wish to donate them to PKD research, please contact us at 800.753.2873 or by email with the following information at least 10 days prior to the kidney removal.

  • Date of surgery
  • Number of kidneys being donated
  • Hospital name and location (address, city, state, zip)
  • Name and contact information of the person donating the kidney(s)
  • Name and contact information of the transplant coordinator
  • Name of the surgeon
  • How long the donor has been on dialysis (if applicable)
  • Date of past transplant(s) (if applicable)

Discarded tissue donation FAQs

Why should people donate PKD kidneys for research? 

Our core facility generates biological materials to be provided to PKD investigators across the country. Human ADPKD cells that are cultured from the cysts of the PKD kidneys are ideal for in vitro model systems since we can precisely control the growth conditions. These in vitro assays are important for testing specific hypotheses, drug screening and validating potential therapeutics.

Is tissue donation anonymous?

Yes, the patient identifiers are removed at the hospital prior to shipping the tissues to our 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 was approved by the Institutional Review Board at the University of Kansas Medical Center.

What biomaterials are distributed to PKD scientists?

Our core generates and provides a variety of biological materials (biomaterials) to investigators in a collaborative arrangement. These biomaterials include paraffin blocks of paraformaldehyde-fixed tissues, frozen tissues, tissue lysates (proteins), RNA, DNA, primary cells and cyst fluid.

How do I donate 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 by visiting kumc.edu/pkdbiomaterials or by calling the Foundation at 800.753.2873.

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

Please feel free to contact us by email or at 800.753.2873 for more information!