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Kidney Week

Abstract: SA-PO0612

Genetic Testing and Living Kidney Donor Candidate Decision-Making: Lessons from a Multicenter International Registry

Session Information

Category: Genetic Diseases of the Kidneys

  • 1201 Genetic Diseases of the Kidneys: Monogenic Kidney Diseases

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, Turkey
  • Velioglu, Arzu, Marmara Universitesi, Istanbul, Turkey
  • Yildiz, Abdulmecit, Bursa Uludag Universitesi, Nilüfer, Bursa, Turkey
  • Radunovic, Danilo, Klinicki Centar Crne Gore, Podgorica, Podgorica Municipality, Montenegro
  • Garg, Neetika, University of Wisconsin System, Madison, Wisconsin, United States
  • Ural, Zeynep, Gazi Universitesi, Ankara, Turkey
  • Mejia, Christina Irene, Johns Hopkins Medicine, Baltimore, Maryland, United States
  • Viklicky, Ondrej, Institut klinicke a experimentalni mediciny, Prague, Czechia
  • Jittirat, Arksarapuk, UH Cleveland Medical Center, Cleveland, Ohio, United States
  • Ozkurt, Sultan, Eskisehir Osmangazi Universitesi, Eskisehir, Turkey
  • Daloul, Reem, Allegheny Health Network, Pittsburgh, Pennsylvania, United States
  • Trujillo, Hernando, Hospital Universitario 12 de Octubre, Madrid, Community of Madrid, Spain
  • Soliman, Karim, Medical University of South Carolina, Charleston, South Carolina, United States
  • Turkmen, Aydin, Istanbul Universitesi, Fatih, Istanbul, Turkey
  • 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
  • Mannon, Roslyn B., University of Nebraska Medical Center, Omaha, Nebraska, United States
  • Lentine, Krista L., Saint Louis University, St. Louis, Missouri, United States
Background

Genetic testing is increasingly used in evaluating living kidney donor candidates (LKDCs), though clear guidelines are lacking. We present findings from LDGen registry designed to capture evolving genetic testing practices during LKDC evaluation.

Methods

LDGen is a cross-sectional, REDCap registry (June 2023-April 2025) collecting de-identified data on LKDCs who (1) underwent genetic testing (2) had family history of genetic kidney disease or (3) were being evaluated to donate to a related intended recipient with kidney disease of unknown etiology. Positive results included pathogenic, likely pathogenic, and clinically relevant VUS.

Results

Among 1175 LKDC evaluations from 17 transplant centers (8 U.S., 9 international), 21% underwent genetic testing (Fig. 1). Testing was done first in intended recipients in 13% and in LKDCs only in 7%. Overall, 4% of LKDCs were not accepted, with higher declination rates in U.S. centers than international ones (16% vs. 2%, p<0.001). Genetic testing accounted for 50% of all declinations (Fig. 2). Key predictors of LKDC declination included evaluation at U.S. center (aOR=5.65, p<0.001), younger age (aOR=0.95, p<0.001), and whether any genetic testing was performed (aOR=10.85, p<0.001). In 241 LKDC evaluations with genetic testing, older donor age was associated with lower odds of declination, while a positive genetic test result increased the odds of declination (aOR=6.23, p<0.001).

Conclusion

The LDGen registry reveals substantial international variability in genetic testing practices among LD evaluations. Positive genetic findings, younger LKDC age, and the use of testing were associated with increased likelihood of LKDC declination. These results underscore the need for standardized protocols and equitable access to genetic counseling in LKDC evaluation.

Digital Object Identifier (DOI)