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Kidney Week

Abstract: SA-PO968

Genetic Evaluation of Living Kidney Donor Candidates: Results from the LDGen Registry

Session Information

Category: Transplantation

  • 2102 Transplantation: Clinical

Authors

  • Caliskan, Yasar, Saint Louis University, St Louis, Missouri, United States
  • Oto, Ozgur Akin, Istanbul Universitesi, Fatih, Istanbul, Turkey
  • Alhamad, Tarek, Washington University in St Louis, St Louis, Missouri, United States
  • Yazici, Halil, Istanbul Yeni Yuzyil Universitesi, Istanbul, İstanbul, Turkey
  • Yildiz, Abdulmecit, Bursa Uludag Universitesi, Nilufer, Bursa, Turkey
  • Velioglu, Arzu, Marmara Universitesi, Istanbul, Istanbul, Turkey
  • Garg, Neetika, University of Wisconsin-Madison, Madison, Wisconsin, United States
  • Soliman, Karim, Medical University of South Carolina, Charleston, South Carolina, United States
  • Jittirat, Arksarapuk, Case Western Reserve University, Cleveland, Ohio, United States
  • Viklicky, Ondrej, Institut Klinicke a Experimentalni Mediciny, Praha, Czechia
  • Ural, Zeynep, Gazi Universitesi, Ankara, Ankara, Turkey
  • Mejia, Christina Irene, Johns Hopkins University, Baltimore, Maryland, United States
  • Daloul, Reem, Allegheny Health Network, Pittsburgh, Pennsylvania, United States
  • Radunovic, Danilo, Klinicki Centar Crne Gore, Podgorica, Montenegro
  • Lee, Brian, Dell Seton Medical Center at The University of Texas, Austin, Texas, United States
  • Thomas, Christie P., University of Iowa Hospitals and Clinics, Iowa City, Iowa, United States
  • Trujillo Cuellar, Hernando, Hospital Universitario 12 de Octubre, Madrid, Comunidad de Madrid, Spain
  • Mannon, Roslyn B., University of Nebraska System, Lincoln, Nebraska, United States
  • Lentine, Krista L., Saint Louis University, St Louis, Missouri, United States

Group or Team Name

  • LDGen Consortium.
Background

We describe our preliminary experience with the launch of a novel international Registry – “LDGen” – as a repository to study current and evolving practices in genetic testing as part of living donor (LD) candidate evaluation.

Methods

A cross-sectional, electronic REDCap registry was developed to collect information on LD candidates and their genetic test results. LD candidates who either 1) underwent genetic testing, and/or 2) had a family history of genetic kidney disease, or 3) are looking to donate to a related recipient with kidney disease of unknown etiology were registered. Data reported here were collected between June, 2023 and May, 2024.

Results

Data on 1004 LD evaluations were obtained representing 12 U.S. and 9 international centers. 39% (n=305) of intended recipients had possible genetic kidney disease. Genetic testing was performed in 17% (n=168) of LD evaluations. Testing in recipient candidate was performed before the LD candidate in 73% (n=122) of cases while it was performed only in the donor candidate in 27% (n=46) of evaluations (Fig. 1A). 125 LD candidates underwent genetic testing and 81% of these donors received formal pre-test genetic counseling. Single gene/limited gene panel (42%) and broad kidney disease gene panel (29%) were the most common methods. 33% (n=41) of the LD candidates who underwent genetic testing during evaluation were not accepted, of which 51% (n=21) of declinations were due to the genetic testing result [Pathogenic/Likely pathogenic variant (n=9), renal risk variants (n=2), VUS (n=10)] (Fig.1B).

Conclusion

Our initial experience supports the feasibility of international collaboration in creating a registry of genetic kidney disease testing practices among LD candidates. With more data, the findings of the LDGen registry will provide value information on global LD evaluation practice patterns.