Patient Engagement

CGNR recognizes the important work of the Can-SOLVE CKD Patient Council.

The study will adopt the structure and goals of the Patient Council, first featuring participants already involved in Can-SOLVE CKD and slowly recruiting CGNR-specific participants.

The priorities defined by the Can-SOLVE CKD Patient Council translate into CGNR’s initiatives.

Can-SOLVE CKD Patient Council Priorities How the priorities translate in CGNR
Development of training procedures for patients in research Input in study questionnaires: What should we be asking? What works for patients when learning to participate in studies and answer questionnaires?
Development and direction of knowledge translation and communications materials Input on patient information sheets, presentations and knowledge dissemination: What do patients want to know about? How can we make these materials accessible? What should the public know about the research and the lives of patients?
Form a working group with involvement in all parts of research projects Attend all study-related meetings and vet ancillary study proposals: What kind of input can patients provide when their information is requested for other studies? How can we make sure patients are present in the entire process of decision-making?
Assist with patient recruitment in research studies Define research priorities: Where should our focus be? What impacts patients’ quality of life? How can we help address this with research?

CGNR is committed to providing relevant and important resources to glomerulonephritis patients.