Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices

Background: Kidney failure is a prevalent condition with tendency for familial clustering in up to 27% of the affected individuals. Living kidney donor (LKD) transplantation is the optimal treatment option; however, in Canada, more than 45% of LKDs are biologically related to their recipients which...

Full description

Saved in:
Bibliographic Details
Main Authors: Somaya Zahran, Ke Fan Bei, Aisha Adil, Princess Okoh, Thomas Kitzler, Ahsan Alam
Format: Article
Language:English
Published: SAGE Publishing 2025-01-01
Series:Canadian Journal of Kidney Health and Disease
Online Access:https://doi.org/10.1177/20543581241293200
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1841548695388028928
author Somaya Zahran
Ke Fan Bei
Aisha Adil
Princess Okoh
Thomas Kitzler
Ahsan Alam
author_facet Somaya Zahran
Ke Fan Bei
Aisha Adil
Princess Okoh
Thomas Kitzler
Ahsan Alam
author_sort Somaya Zahran
collection DOAJ
description Background: Kidney failure is a prevalent condition with tendency for familial clustering in up to 27% of the affected individuals. Living kidney donor (LKD) transplantation is the optimal treatment option; however, in Canada, more than 45% of LKDs are biologically related to their recipients which subjects recipients to worse graft survival and donors to higher future risk of kidney failure. Although not fully understood, this observation could be partially explained by genetic predisposition to kidney diseases. Genetic testing of potential LKDs may improve risk assessment and inform the safety of donation. The strategies to evaluate these donors are still evolving. In Canada, little is known about the practice of assessing for genetic conditions among LKDs. Aim: The aim was to examine the Canadian practices regarding LKDs genetic assessment. Methods: Questionnaires were sent to 23 Canadian adult transplant centers to examine their protocols for LKDs genetic assessment. Design: The questionnaire comprised of 10 sections and 21 questions including case scenarios of different LKD encounters. Major domains of the survey addressed general demographics, information sharing practices, effect of mode of inheritance on candidacy decision, having a policy for LKD genetic evaluation, and case scenarios covering the following conditions: autosomal dominant polycystic kidney disease (ADPKD), Alport syndrome, Fabry disease, familial focal and segmental glomerulosclerosis (FSGS), atypical hemolytic uremic syndrome (aHUS), autosomal dominant tubulointerstitial kidney disease (ADTKD), sickle cell, and apolipoprotein L1 mutation (APOL1). Participants: The questionnaire was sent to the living-donor assessment committee representative (nephrologist) in adult and pediatric kidney transplant centers across Canada. Results: In total, 16 of 23 Canadian centers responded to the survey. Of the 8 surveyed genetic conditions, ADPKD, Alport syndrome, and aHUS were the most frequently encountered. More centers have specific policies for donor evaluation for ADPKD (25%) and aHUS (21.4%) vs none to very few for other genetic conditions. The most cited guidelines are Kidney Disease Improving Global Outcomes (KDIGO), Canadian Society of Nephrology/Canadian Society of Transplantation (CSN/CST), and the Canadian Blood Services’ Kidney Paired Donation Protocol. Conclusions: Canadian transplant centers follow a case-by-case approach rather than a standard protocol for genetic assessment of LKDs given that current guideline recommendations are based on expert opinion due to a lack of a reliable body of evidence. With the expected rise in utilization of the increasingly available genetic testing, early multidisciplinary assessment including medical geneticists has the potential to improve personalized management. Studies examining long-term donor and graft outcomes are needed to construct the basis for evidence-based recommendations and inform the safety of donations.
format Article
id doaj-art-c80c8ce4511842a890348a11d2816f8e
institution Kabale University
issn 2054-3581
language English
publishDate 2025-01-01
publisher SAGE Publishing
record_format Article
series Canadian Journal of Kidney Health and Disease
spelling doaj-art-c80c8ce4511842a890348a11d2816f8e2025-01-10T14:03:29ZengSAGE PublishingCanadian Journal of Kidney Health and Disease2054-35812025-01-011210.1177/20543581241293200Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian PracticesSomaya Zahran0Ke Fan Bei1Aisha Adil2Princess Okoh3Thomas Kitzler4Ahsan Alam5Division of Nephrology, Department of Medicine, McGill University Health Center, Montreal, QC, CanadaLatner Thoracic Surgery Research Laboratories, Toronto General Hospital, The University Health Network, ON, CanadaCanadian Donation and Transplantation Research Program, Edmonton, AB, CanadaAjmera Transplant Center, Toronto General Hospital, The University Health Network, ON, CanadaChild Health and Human Development Program, Research Institute of MUHC, McGill University Health Centre, Montreal, QC, CanadaMultiorgan Transplant Program, Division of Nephrology, Department of Medicine, McGill University Health Centre, Montreal, QC, CanadaBackground: Kidney failure is a prevalent condition with tendency for familial clustering in up to 27% of the affected individuals. Living kidney donor (LKD) transplantation is the optimal treatment option; however, in Canada, more than 45% of LKDs are biologically related to their recipients which subjects recipients to worse graft survival and donors to higher future risk of kidney failure. Although not fully understood, this observation could be partially explained by genetic predisposition to kidney diseases. Genetic testing of potential LKDs may improve risk assessment and inform the safety of donation. The strategies to evaluate these donors are still evolving. In Canada, little is known about the practice of assessing for genetic conditions among LKDs. Aim: The aim was to examine the Canadian practices regarding LKDs genetic assessment. Methods: Questionnaires were sent to 23 Canadian adult transplant centers to examine their protocols for LKDs genetic assessment. Design: The questionnaire comprised of 10 sections and 21 questions including case scenarios of different LKD encounters. Major domains of the survey addressed general demographics, information sharing practices, effect of mode of inheritance on candidacy decision, having a policy for LKD genetic evaluation, and case scenarios covering the following conditions: autosomal dominant polycystic kidney disease (ADPKD), Alport syndrome, Fabry disease, familial focal and segmental glomerulosclerosis (FSGS), atypical hemolytic uremic syndrome (aHUS), autosomal dominant tubulointerstitial kidney disease (ADTKD), sickle cell, and apolipoprotein L1 mutation (APOL1). Participants: The questionnaire was sent to the living-donor assessment committee representative (nephrologist) in adult and pediatric kidney transplant centers across Canada. Results: In total, 16 of 23 Canadian centers responded to the survey. Of the 8 surveyed genetic conditions, ADPKD, Alport syndrome, and aHUS were the most frequently encountered. More centers have specific policies for donor evaluation for ADPKD (25%) and aHUS (21.4%) vs none to very few for other genetic conditions. The most cited guidelines are Kidney Disease Improving Global Outcomes (KDIGO), Canadian Society of Nephrology/Canadian Society of Transplantation (CSN/CST), and the Canadian Blood Services’ Kidney Paired Donation Protocol. Conclusions: Canadian transplant centers follow a case-by-case approach rather than a standard protocol for genetic assessment of LKDs given that current guideline recommendations are based on expert opinion due to a lack of a reliable body of evidence. With the expected rise in utilization of the increasingly available genetic testing, early multidisciplinary assessment including medical geneticists has the potential to improve personalized management. Studies examining long-term donor and graft outcomes are needed to construct the basis for evidence-based recommendations and inform the safety of donations.https://doi.org/10.1177/20543581241293200
spellingShingle Somaya Zahran
Ke Fan Bei
Aisha Adil
Princess Okoh
Thomas Kitzler
Ahsan Alam
Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
Canadian Journal of Kidney Health and Disease
title Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
title_full Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
title_fullStr Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
title_full_unstemmed Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
title_short Genetic Assessment of Living Kidney Transplant Donors: A Survey of Canadian Practices
title_sort genetic assessment of living kidney transplant donors a survey of canadian practices
url https://doi.org/10.1177/20543581241293200
work_keys_str_mv AT somayazahran geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices
AT kefanbei geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices
AT aishaadil geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices
AT princessokoh geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices
AT thomaskitzler geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices
AT ahsanalam geneticassessmentoflivingkidneytransplantdonorsasurveyofcanadianpractices