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.