Retinoblastoma affects 1 child in every 15,000 live births, with about 23 children being diagnosed in Canada each year. We estimate that there are nearly 2,000 retinoblastoma survivors in Canada, and while retinoblastoma is a rare disease, when we consider everyone touched by retinoblastoma, from family and friends to professionals in the field, the community is quite large.
The Canadian Retinoblastoma Research Community was created as a mechanism to formally connect members of the Canadian Retinoblastoma Community who are interested in research. This group of retinoblastoma patients, health professionals, and researchers receive updates on retinoblastoma research and information on opportunities to partner in research.
Retinoblastoma research that includes patients as equal partners improves the quality of research results, accelerates the uptake of research findings to in turn, improve patient outcomes, and ensures that research outcomes are aligned with patient needs.
The Canadian Retinoblastoma Research Advisory Board (CRRAB) is composed of patients, health professionals, and researchers from across Canada who participate in patient-partnered research and related activities and events. CRRAB leads a Patient Engagement Strategy with 3 main aims:
- share research results with patients;
- identify and include a large and diverse group of patients in research; and
- promote research that is created and led by patients.
CRRAB was designed to be led by volunteer patients, health professionals, and researchers, with administrative support provided by the retinoblastoma research team based at The Hospital for Sick Children (Toronto, Canada).
CRRAB members partake in a variety of activities to support our patient engagement aims including:
- organizing and hosting the annual Retinoblastoma Research Symposium
- facilitating project-specific patient partnerships to develop and advance retinoblastoma research projects
- promoting the Canadian Retinoblastoma Research Community
- promoting education, advocacy, and support for retinoblastoma research
- hosting an awareness table during retinoblastoma follow-up clinics to showcase the Canadian Retinoblastoma Research Community
- offering tools and platforms for patient partnership in research
- building connections between patients, health professionals, and researchers
Reach out to us or attend an upcoming CRRAB event such as the annual Retinoblastoma Research Symposium, Quarterly General Meetings, Regional Working Groups or Project-Specific Workshops & Working Groups to get involved in ongoing activities. The continued success of CRRAB rests on the involvement of everyone in the Retinoblastoma Research Community.