What are the Living Kidney Donor Registries?

When people are waiting for a kidney transplant, they are placed on the kidney transplant waiting list. The last blog discussed the Deceased Kidney Donor Waiting List. Did you know there are separate lists for Living Kidney Donors? The living kidney donor lists are called kidney registries. This blog will discuss these kidney registries.

What is a Kidney Registry?

According to the Merriam-Webster dictionary, a registry is a place where official records are kept. When we talk about kidney registries, these are computer programs that have information about the people who want to be kidney donors (potential donors) and the people who want a living kidney transplant (potential recipients). The kidney registries were developed to help match the best kidney for a recipient.

How many kidney registries are there in the U.S.?

Unfortunately, there is not one single kidney registry in the United States. This would be the best option for recipient matching because there would be the largest pool of potential donors. More donors mean finding a better-matched or compatible kidney. Finding the most compatible kidney means it will likely last longer for the recipient.

Isn’t that what everyone wants for those with kidney failure? The best kidney and the longest life!

Instead, there are three national registries, and each transplant center may have its own internal system or registry for matching living donors and recipients. So that means there are over 250 registries. A transplant center can pay an annual fee to be a member of one, two, or all three of the national registries. 

What are the Big 3 Kidney Registries?

Why should you care about kidney registries?

Typically, donors and recipients do not know the details of whether or not a transplant center is aligned with a registry. It may come up in discussions during the workup process and it may not. There are some very good reasons that a potential living donor should ask about registries if considering a paired exchange or a non-directed donation. There could be specific donor benefits that are associated with a registry.

For example, National Kidney Registry has a Donor Shield program that provides comprehensive donor support and protections. More information can be found here. The Alliance for Paired Kidney Donation has a Donor Protection Program with information here. 

It is worth exploring all of the protections available through the transplant centers and registries before making the decision about where to donate. This can potentially save money if you travel for the workup and surgery, anticipate lost wages, experience complications, need insurance, or require legal support related to your donation.

All kidney donors at a minimum should be provided with the benefits that make up the Donor Shield program. Be sure to ask your transplant center what benefits they provide to kidney donors.

What does it mean for kidneys to be a “match” or “compatible”?

When kidney donors and recipients are matched, these are some items that are assessed for compatibility:

• Blood Type or AB0 antigens
• Human Leukocyte Antigens (HLA)
• Crossmatch
• Size of the kidney
• Age of the donor and recipient

If you are a donor with an incompatible recipient or if you want to donate to anyone (non-directed, altruistic, good samaritan) then your information goes into the registry computer system. This complex system also has the recipient data. The computer matching program is run daily to help find the best matched (most compatible) donor and recipient pairs. The transplant center coordinators will contact you when the matches are found. You can discuss how “good” the match is and can proceed or request a better match.

Consider This!

Kidney registries provide a very important service by matching living kidney donors and recipients. The more hospitals that are part of a registry, it increases the chance of matching a more compatible donor and recipient, providing the best outcome for those with kidney failure.

Maybe you would like to know if you are healthy enough to be a living kidney donor.

For help, go to Kidney Donor Conversations at www.MyKDC.org.

Resources

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Receive Living Kidney Transplant/Donor Updates HERE

Would you like more information about Living Kidney Donation, email us at info@MyKDC.org

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Glenna Frey, APRN-CNS, is a nephrology nurse who donated her kidney in April 2017 to a stranger.
Amanda Frey, M.A., LMFT, LPC, is a Marriage & Family Therapist living with kidney disease.
Together, they co-founded Kidney Donor Conversations in 2018 to provide education about Living Kidney Donation.