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.

As of April 2022, PKDF is able to connect patients with both autosomal dominant and autosomal recessive PKD with researchers collecting human tissue samples. Researchers are also interested in liver donations from ARPKD patients.

Why should I donate my kidney for research?

• Tissue donation is one of the most important things patients can do to support PKD research.
• Patient samples provide an important opportunity to study the disease in the human condition.
• ADPKD cells harbor the genetic mutations that are responsible for cyst formation. ARPKD cells also provide valuable genetic information about disease progression.
• It is very difficult to replicate human disease in animals.
• Medical research using human samples benefits future patients.
• There is no cost to the patient to donate discarded PKD kidneys for research.
• Your decision to donate does not impact your care.
• Tissue donation is anonymous; your patient identifiers are removed at the hospital prior to shipping the tissues to the lab. The only information provided about you 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?

PKD kidneys are retrieved by participating hospitals at the request and consent of the patient or parent of young patients. 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:
• Tissue donation information form
• ADPKD Consent Form
• ARPKD Consent Form
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.

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).

What happens to my kidneys

• In the Operating Room, the kidneys are immediately sealed and chilled on ice.
• After examination by the pathologist, kidneys are shipped to the research laboratory.
• Tissues are isolated in a semi-sterile environment.
  • Fixed in formalin and embedded in paraffin for tissue sections
  • Snap-frozen in liquid nitrogen and stored in -80° C (-112° F) freezers
  • Tissue may be homogenized to study DNA, RNA, and protein levels
• Individual and pooled cyst fluids are collected and stored at -80° C.
• Surface cysts are used to generate primary cultures of ADPKD cells.

What can researchers learn from donated ADPKD kidneys?

• Processes involved in initial cyst formation
  • Genetic events that initiate cyst formation
  • Cellular pathways that cause tubule cells to proliferate to form a cyst
  • Origin of cysts (i.e., tubule type)
• Therapeutic targets that are important for the progression of the disease
• The role of the “microenvironment” within the PKD kidney on cyst growth, inflammation, and fibrosis
• The effect of new therapeutic agents on human ADPKD and ARPKD cyst cells.

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 (NDRI).

Learn more about the NDRI here.

Facts about donating organs and tissues to research here.

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).

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 816.268.8478 for more information!