Kidney failure is a simple term without a simple definition. In fact, more than 150 different interpretations have been used in clinical trials to date.

This lack of consensus makes it difficult to interpret and compare the results of large clinical trials, placing nephrology at a disadvantage relative to other specializations.

A two-day meeting in Vancouver at the end of January aimed to present, vet, and clarify draft definitions of kidney failure as endpoints in clinical trials in order to improve the consistency and understanding of clinical trial data. The meeting, organized by the International Society of Nephrology, brought together kidney doctors, clinical trialists, regulators, and industry scientists from 17 countries.

Significantly, the participants included six patient partners, including three members of the Can-SOLVE CKD Patient Governance Circle. Canadian patient partners Mary Beaucage, Kate Chong, and Hans Vorster were joined by colleagues Glenda Roberts (United States), Duane Sunwold (United States), and Madeleine Warren (United Kingdom).

The inclusion of patient partners marked a novel addition to an international meeting of this type, and their participation offered an important human perspective on the clinical trial terminology under discussion.

“Since the reason we do clinical trials is to help people affected by kidney disease, it is most appropriate that we hear and take into account their perspectives,” said Dr. Adeera Levin, Can-SOLVE CKD Co-Principal Investigator and Past-President of the International Society of Nephrology.

At an introductory session, the patient partners shared their personal journeys with kidney disease and highlighted the ways these experiences have shaped their involvement in research. This was followed by breakout groups and focused discussion aimed at understanding the nuances of different definitions of kidney failure.

The meeting’s outcomes will be published and made available to researchers and health care professionals worldwide as part of a long-term goal to improve the evidence base from which to treat patients with kidney diseases.

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Left to right: Mary Beaucage (Canada), Madeleine Warren (United Kingdom), Hans Vorster (Canada), Kate Chong (Canada), Duane Sunwold (United States), Glenda Roberts (United States)

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