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The Registry of persons with kidney disease Considering participation in Research Database (RECORD) stems from Canadians Seeking Solutions and Innovations for Chronic Kidney Disease (Can SOLVE CKD). Patient and knowledge user engagement in Can SOLVE CKD suggested patients are interested in participating in clinical research but are often unaware of opportunities. Similarly, nephrology researchers are uncertain of the potential numbers and logistics of approaching patients in many centres across Canada to participate in clinical research. A registry that actively informs patients of the reasons for research and potential research opportunities that they could participate in may help foster a culture of participation for both patients and researchers. Additionally, this registry would inform researchers about the number and location of potential participants at Canadian centres.

RECORD will register patients undergoing treatment for kidney disease in Canada who are interested in potentially participating in clinical research and collect information about the type of research they are willing to participate in both generally (i.e., observational, requiring blood, urine or genetic samples, interventional with an older/ already in-use pharmacologic agent, interventional with a new pharmacologic agent, interventional with a medical device, interventional with a change in dialysis, interventional with a behavioral intervention), and will also collect information about the relevance, acceptability and eligibility of clinical research studies that are planned. Finally, RECORD will allow participants to receive information about what clinical kidney research is occurring in Canada and whether there are specific opportunities that are relevant to them.

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Study Type

Observational - Registry

Study Design

Registry

NO. of Countries

1

NO. of Sites

20

Study Period

2020-2023

Sponsor

PHRI

Funded by CIHR through CAN-SOLVE CKD Network

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