Living kidney donation is a life-saving treatment for people with kidney failure, but important questions remain about the long-term health of the donors. Data access has been granted for a new pan-Canadian study that will use more than 30 years of linked health administrative data to provide high-quality evidence on the risks of donation. This evidence will be critical to assure donor safety, inform donation guidelines, and support patients, families, and clinicians in decision-making around living kidney donation.
“We are undertaking multicenter retrospective population-based cohort studies using linked healthcare administrative databases from three Canadian provinces: Ontario, British Columbia (BC), and Alberta,” says research team member Dr. Amit Garg, a nephrologist and scientist, at the London Health Sciences Centre in Ontario. “Because living kidney donors are carefully selected for good health, understanding the risks of donation requires an equally healthy comparison group. This study offers one of the few ways to rigorously measure the long-term risks that may be attributable to donation.”
Using linked health administrative data, the team will study approximately 7,300 living kidney donors from Ontario, BC, and Alberta. Across multiple outcome studies, the team will examine whether donation is associated with higher long-term risks such as cardiovascular disease, death, fragility fractures, or kidney failure requiring dialysis. The research will also identify factors that may place some donors at higher risk, including pre-donation health, socio-demographic characteristics, healthcare use, quality of follow-up care, and laboratory measures of kidney health. The team will also assess whether donors receive appropriate care after donation, including recommended kidney health monitoring and safe medication use. Together, these findings will help identify where donor follow-up can be strengthened and where more tailored surveillance may be needed.
Results will be shared through multiple channels to ensure they reach relevant knowledge users, including BC Renal and Transplant, Canadian Blood Services, Ontario Renal Network, Alberta Kidney Disease Network, Trillium Gift of Life Network, and Kidney Disease: Improving Global Outcomes. Findings will be shared through peer-reviewed publications, conference presentations, plain-language summaries, and presentations to patient partners, donor advocacy groups, and the transplant community. The team will also engage policymakers, health system leaders, and guideline committees to help translate results into improved donor counselling, follow-up care, and informed consent.
“Ultimately, this research will support safer, more patient-centred care for living kidney donors,” says Rhiannon Lyons, a PhD student at McMaster University and the lead trainee on the project. “By improving the evidence available to clinicians, patients, and health systems, we can strengthen donor follow-up and enhance public trust in living donation programs.”
PopData provided the research team with guidance and support throughout the Data Access Request process.
The study is funded by the Academic Medical Organization of Southwestern Ontario (AMOSO).
