National Kidney Registry

National Kidney Registry
Nonprofit
Industry
Founded July 12, 2007 (2007-07-12)
Headquarters Babylon, New York, U.S.
Area served
U.S.
Website kidneyregistry.org

The National Kidney Registry (NKR) is a national registry in the United States listing kidney donors and recipients in need of a kidney transplant. NKR facilitates over 360 "Kidney Paired Donation" (KPD) or "Paired Exchange" transplants annually.[1][2]

More than one-third of potential living kidney donors who want to donate their kidney to a friend or family member cannot because of blood type or antibody incompatibility.[3] Historically, these donors would be turned away and the patient would lose the opportunity to receive a life-saving kidney transplant. KPD overcomes donor-recipient incompatibility by swapping kidneys between multiple donor-recipient pairs, and connecting them in longer chains, as well as taking an altruistic non-directed donor, and start chains of kidney transplants.

What the NKR does is consolidate the incompatible pairs of donors and recipients from transplant centers all over the United States, into a single registry, and facilitate the transplant process.


History

The NKR was founded in 2007 by the Hil family, after their youngest daughter lost her kidney function at age ten. Both parents were ruled out from donating to their daughter because they were biologically incompatible. After many unsuccessful attempts to find a compatible donor through all of the kidney paired exchange programs in the United States, a compatible donor was found. After this transplant ordeal, the Hil family founded the National Kidney Registry to eliminate the problem of incompatible donors, by building a national kidney paired donation (KPD) program.

The NKR organized its first swap on Valentine’s Day in 2008 at Cornell Medical Center in New York City.[4] This first swap was a 3-deep chain that ended with a bridge donor who donated two months later, extending the chain to 5-deep.[5] This chain was broken after the bridge donor reneged following many failed cross matches that required the donor to repeatedly go to the hospital for blood draws.

The NKR’s second swap started with the shipment of a kidney from Cornell to UCLA School of Medicine. This was the first time a living donor kidney was shipped on a commercial airplane. This second chain crossed the country three times, facilitating eight total transplants at UCLA, Cornell, Stanford University School of Medicine, and California Pacific Medical Center [6] Ultimately, this chain was broken when the bridge donor reneged.

Based on these early experiences, many safe guards were implemented to reduce the risk of broken chains, which dropped the frequency of broken chains from 33% in 2008 to 2% in 2015.[2]

In 2012, the NKR broke the world record for the largest kidney swap by organizing a 30-deep chain] involving 60 donors and recipients. This chain was started by Rick Ruzzamenti a 44-year-old from Riverside, California. The swap took four months to complete and involved 17 different transplant centers across 11 states.[7] Three years later, on March 26, the next record breaking chain was set into motion by Kathy Hart, a 48-year-old attorney from Minneapolis. This swap took two months to complete and involved 26 different transplant centers.[8]

The NKR has facilitated 2084 kidney transplants, as of March 22, 2017. [9]

Key Innovations

The rapid growth of KPD transplants in the United States has been driven by the following key NKR innovations.

Media Coverage

The NKR's innovations have generated significant media coverage including a front page story in the New York Times.[22] and nationally televised interviews by Katie Couric with the CBS Evening News. [23] Diane Sawyer from ABC News,[24] and Byron Pitts at Nightline.[25]

References

  1. Transplant:Donor Relation by Transplant Center (Report). Organ Procurement and Transplantation Network. Retrieved 6 Apr 2016.
  2. 1 2 3 Paired Exchange Results Quarterly Report (Report). National Kidney Registry. 2015.
  3. Segev; Gentry; Warren; Reeb; Montgomery (20 Apr 2005). "Kidney Paired Donation and Optimizing the Use of Live Donor Organs". JAMA. Original Contribution. 293 (15): 1883–1890. doi:10.1001/jama.293.15.1883.
  4. "First Valentine's Day Donor Chain" (Press release). National Kidney Registry. 20 Feb 2008.
  5. "Acts of Kindness Between Strangers". NBC New York Nightly. Retrieved 7 Apr 2016.
  6. Asynchronous, Out-of-Sequence, Transcontinental Chain Kidney Transplantation. American Journal of Transplantation 2009 (Report).
  7. "Largest Kidney Donor Chain: National Kidney Registry sets world record". www.worldrecordacademy.com. World Record Academy. 21 Feb 2012.
  8. Pitts; Louszko; Cappetta; Effron; Valiente (14 Apr 2015). "Donating a Kidney to a Complete Stranger in Order to Save a Loved One". ABC News.
  9. "National Kidney Registry".
  10. Baxter-Lowe; Cecka; Kamoun; Sinacore; Melcher (26 Feb 2016). "Center-Defined Unacceptable HLA Antigens Facilitate Transplants for Sensitized Patients in a Multi-Center Kidney Exchange Program". XX. American Journal of Transplantation: 1–7.
  11. Veale; Hil. "National Kidney Registry: 213 Transplants in 3 Years". Clinical Transplants 2010: 333–344.
  12. Mast; Vaughan; Busque; Veale; Roberts; Straub; Flores; Canari; Levy; Tietjen; Hil; Melcher (8 June 2011). "Managing Finances of Shipping Living Donor Kidneys for Donor Exchanges". American Journal of Transplantation.
  13. "NKR Introduces GPS Tracking Technology" (Press release). National Kidney Registry. 16 Aug 2010.
  14. Timmer (6 Jan 2015). "The math of organ donation:Kidneys are an NP-Hard problem". Ars Technica.
  15. "Medical Board Policies". www.kidneyregistry.org. National Kidney Registry. Retrieved 10 Apr 2016.
  16. Veale; Hil (9 Apr 2012). "The National Kidney Registry:175 Transplants in One Year". Clinical Transplants 2011.
  17. "Where Are We Going with Kidney Paired Donation? A Nationally-run Private Program Works Best". American Society of Transplantation.
  18. Bingaman; Wright Jr.; Kapturczak; Shen; Vick; Murphey (1 Mar 2012). "Single-Center Kidney Paired Donation: The Methodist San Antonio Experience". American Journal of Transplantation. 12: 2125–2132. doi:10.1111/j.1600-6143.2012.04070.x.
  19. 1 2 "National Kidney Registry Initiates Donor Blood Cryo-Preservation" (Press release). National Kidney Registry. 2 Dec 2014.
  20. Berz; McCormack; Winer; Colvin; Quesenberry (12 Nov 2007). "Cryopreservation of Hematopoietic Stem Cells" (PDF). Am. J. Hematol. National Institute of Health. 82 (6): 1–16. PMC 2075525Freely accessible. PMID 17266054. doi:10.1002/ajh.20707.
  21. Flechner; Leeser; Pelletier; Morgievich; Miller; Thompson; McGuire; Sinacore; Hil (31 Mar 2015). "The Incorporation of an Advanced Donation Program Into Kidney Paired Exchange: Initial Experience of the National Kidney Registry". XX. American Journal of Transplantation: 1–6.
  22. Sack, Kevin (18 Feb 2012). "60 Lives, 30 Kidneys, All Linked". New York Times.
  23. Couric, Katie (10 Nov 2010). "Kidney Chains Link Strangers". CBS Evening News.
  24. Sawyer, Diane (20 Feb 2012). "Kidney Donation Leads to Unexpected Kindness". ABC News.
  25. Pitts; Louszko; Cappetta; Effron; Valiente (15 Apr 2015). "Changing Lives Through Donating Kidneys to Strangers". ABC News Nightline.
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