The Canadian Retinoblastoma Research Advisory Board would like to introduce you to the Retinoblastoma Research and You! booklet; a new guide to patient engagement for retinoblastoma families and survivors.
Retinoblastoma is a rare childhood eye cancer. The clinical treatment and follow-up of retinoblastoma patients can take several different and complex paths that can be stressful and confusing for patients and their families. People affected by retinoblastoma have indicated that they want to learn about and help shape the direction of current research.
Patient engagement in research refers to the meaningful involvement of patients throughout any or all aspects of the research process. It involves patients working alongside clinicians and researchers to create research that is relevant to patients and improves care and quality of life. The Canadian Retinoblastoma Research Advisory Board aims to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes.
This is where the ‘Retinoblastoma Research and You!’ booklet comes into play. This guide was created to raise awareness about and catalyze patient engagement in retinoblastoma research in Canada. It highlights real-world examples of patient-partnered research activities and opportunities — illustrated through testimonials written by Retinoblastoma Champions, patients who actively promote patient engagement in research by drawing from their personal experience and participate in the Canadian Retinoblastoma Research Community.