New living kidney donor registry, at-home testing meant to increase donor pool
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Donate Life America is partnering with the Fresenius Medical Care Foundation to reduce barriers to living donation.
The objective of the new National Donate Life Living Donor Registry is to increase the supply of healthy kidneys available for those who need them. “More than 95,000 people are waiting for a transplant, and there are simply not enough deceased donor kidneys to fulfill the level of need,” Bill Valle, CEO of Fresenius Medical Care North America and president of the foundation, said. “We also know that we see higher post-transplant rates of success with living kidney donor transplants than with deceased donor transplants, making this effort to increase living donation a clear priority.”
Increased accessibility
The new program will streamline the process for those interested in donating a kidney, according to David Fleming, president and CEO of Donate Life America.
“We are building this national living donor registry because there is not an immediate or user-friendly option to activate the generosity inspired by living donor storytelling, outreach and education,” Fleming told Nephrology News & Issues. The current pathway to kidney donation relies on the potential donor to contact a transplant center to find out whether they have a transplant program and initiate the donation process, all with “no guarantee that their offer will be seriously considered or stewarded.”
The new registry will remove the onus from the potential donor; Donate Life America is utilizing their existing National Donate Life Registry technology to capture interest from new registered deceased organ, eye and tissue donors as well as to market the option of living kidney donation to those who have already registered, Valle said. “We are hopeful that by creating a more accessible system, we can increase the number of potential donors, in turn creating more opportunities for people living with kidney disease to receive transplants.”
Test at home
The program will also pilot an at-home testing kit, starting with five to seven pilot transplant programs in the spring and eventually rolling out to the general public. Those who register for donation with Donate Life America will be offered the option to receive the testing kit to determine initial eligibility to be a living kidney donor. The test kit is modeled on the National Marrow Donor Program’s test kit and process and allows the potential donor to mail a sample to a lab for testing at no cost to them.
“The test kit will require potential donors to provide a saliva sample that will help lab analysts determine their blood type and human leukocyte antigen (HLA) type,” Fleming said. “Test results and health information will be uploaded to a secure database where the data is attached to the potential donor’s registration record, including contact information.”
The registry is also partnering with the United Network for Organ Sharing to connect each eligible potential donor to a living donor transplant program.
Spread the word
Donate Life America will share information about the registry through marketing efforts and through its partners. Fleming said the organization will use this opportunity to build on its current educational resources, which it offers to potential living donors, registered donors, transplant candidates, recipients, families and caregivers, and the general public each day.
“Living donors should be in good overall physical and mental health and older than 18 years of age. Some medical conditions could prevent an individual from being a living donor,” Fleming said. “It is important to be fully informed of the known risks involved with donating and complete a full medical and psychosocial evaluation, which will be done through the transplant program. The decision to donate should be completely voluntary and free of pressure or guilt.”
He added, “We are so excited to offer this opportunity for the public to register and enter the living donor pathway.” – by Amanda Alexander
Reference:
www.healio.com/nephrology/transplantation/news/online/%7B7f28956a-89dc-494e-bde6-a1bbf6f85220%7D/fresenius-donate-life-america-announce-new-living-donor-registry
Disclosures: Fleming and Valle report no relevant financial disclosures.