The Canadian Nephrology Trials Network (CNTN) Research Symposium was held on May 9 at the Canadian Society of Nephrology AGM. Co-moderated by Dr. Karthik Tennankore and Hans Vorster, attendees learned about what CNTN has been up to, where they are going, and how to get involved. The session included presentations from Dr. David Collister, Dr. Remi Goupil and Dr. Dylan MacKay.
You are invited to give your opinion on the top three
most important research questions on cognitionin people with Chronic Kidney Disease.
Cognition (the ability to remember, learn new things, focus, and/or make everyday life decisions) has been identified as a top research priority for people with Chronic Kidney Disease. The aim of this survey is to find out what specific research questions about cognition are important to people living with kidney disease, their family members, as well as researchers, clinicians, and decision makers. This will help guide future research in Chronic Kidney Disease.
The questions you identify can be for any stage of Chronic Kidney Disease (non-dialysis Chronic Kidney Disease, dialysis, or transplant) or modality (peritoneal dialysis, in-centre/home hemodialysis) so please be specific with your questions. For example: What is the role of exercise in improving cognition in people who do peritoneal dialysis?
There are no right or wrong and answers. Further information can be found in the Research Participant Information and Consent Statement.
This survey is voluntary, and all responses will be kept secure; responses will be stripped of email addresses prior to analyses. Your participation will involve completing three survey rounds over the next few months in order to reach consensus. Each round will take approximately 10- 15 minutes to complete. Please complete all three rounds. All participants who complete the surveys will receive a report of the final results.
Completing the survey implies that you have consented to participate.
If you have any questions about the research now or later, please contact the Principal Investigator, Dr. Clara Bohm at email@example.com or the Research Coordinator, Oksana Harasemiw at firstname.lastname@example.org or 1-204-632-3541.
Pragmatic cluster randomized trials held at dialysis facilities present complex and interesting ethical issues. This training module, which was modified from the publication Ethical Issues In Pragmatic Cluster-Randomized Trials In Dialysis Facilities, (American Journal of Kidney Diseases, June 19, 2019), was designed provide you, the viewer, with a clear understanding of ethical issues that need to be addressed in such pragmatic cluster randomized trials. The research team conducted empirical studies and ethical analyses to provide expert guidance for the ethical design and conduct of pragmatic CRTs in dialysis facilities.
This work is part of a larger research project, titled “Integrated Platform for Innovative Pragmatic Cluster-Randomized Registry Trials in Hemodialysis,” which focuses on improving the experiences, outcomes, and healthcare of patients receiving hemodialysis. Conducted by an interdisciplinary research team including patient partners, this project has brought together expertise and health data assets onto an integrated platform to conduct innovative pragmatic registry trials in hemodialysis, and to translate these comparative-effectiveness trials into better practice.
Earlier this year, a multidisciplinary team of 9 patients, 74 clinicians/health administrators, 5 policymakers, and 43 researchers, partnering across 13 Universities, 7 SPOR-funded entities, 6 health data organizations, 4 provincial renal agencies, 3 health charities, and 3 companies received a renewal of a CIHR SPOR Innovative Clinical Trial Multi-Year Grant.
CNTN will be supporting the activities of this grant in several ways, including posting new resources to build capacity and promote pragmatic trials in Canada.
Recently, as a part of this grant, Dr. Amit Garg, along with Drs. Merrick Zwarenstein and Ahmed Al-Jaishi spoke about pragmatic trials at the NIH Collaboratory’s Rethinking Clinical Trials Grand Rounds. During their presentation, they discussed some of the defining differences between pragmatic and explanatory trials using an ongoing hemodialysis temperature trial (MyTEMP) as an example.
The comic was created by people with lived experience of suicide at the REFLECT research forum which brought together patients and caregivers as well as suicide prevention researchers, trainees and policy-makers.
The top 10 recommendations are:
Use common and clear language
Allow for customization to patient partner’s needs. Be flexible.
Be authentic in the approach to patient-oriented research. Avoid tokenism.
Define roles. Invite and acknowledge everyone’s contributions.
Balance power dynamics.
Invite patient partners to do more than what they are recruited for.
Compensate fairly and as a matter of course. Reimburse expenses.
Build relationships through honesty and trust.
Ensure governance through integrity and accountability.
Establish and encourage continuous communication and feedback.