The SPOR is an initiative from the Canadian Institutes of Health Research (CIHR) which aims to ensure that more Canadian health research funding is targeted at areas that will make a difference in the lives of patients and their families.
PARTNERS (Patient Assisted Research Transforming National Effectiveness in Rare Diseases)is a proposed SPOR Network in Chronic Disease that has a vision of working together with Canadian rare disease patients and their families to implement a clinical care and research strategy that will improve outcomes and reduce the burden of rare disease. PARTNERS is focused on organizing the health care system in a way that meaningfully reduces challenges faced by rare disease patients and families across all aspects of their care.
The information that is collected will be used to help researchers to focus the PARTNERS plan on areas that will have the biggest impact in the lives of rare disease patients and families.
Yes! If the grant application is successful we will be interested in re-engaging all interested patients and family members to continue to work with us to shape the development of the PARTNERS Network. Only by working in partnership with patients and families will we be able to have meaningful impacts on rare disease research and clinical care.
Web survey data will be collected using the Survey Gizmo platform, a US-based service. No identifying information will be collected as part of the survey. The Survey Gizmo platform does not own data collected by surveys mounted on their platform so the University of Calgary will retain data ownership of survey data. At completion of the survey a complete copy of the survey data will be downloaded and retained at the University of Calgary on a secured drive. The survey will then be deleted from the Survey Gizmo account belonging to the PARTNERS research team.
Web survey participants will be asked to read through informed consent information as outlined in the survey consent form before beginning the survey. Submission of web survey data will be deemed to imply consent.
For more information, please contact:
Megan Johnston, Project Manager
University of Calgary