Retinoblastoma is a very rare type of cancer that develops in the retina (the part of the eye at the back that senses light). It is the most common type of primary1 eye cancer in children.2 Despite its rarity, it is highly treatable and actively researched.
The Canadian Retinoblastoma Research Advisory Board (CRRAB) has published a handbook for patient engagement in retinoblastoma research, titled “Retinoblastoma Research and You!” It provides an accessible introduction to the spectrum of ways for retinoblastoma patients to get involved in retinoblastoma research in Canada. It may be accessed here: Retinoblastoma Research and You! booklet. Its intended audience is anyone affected by or interested in retinoblastoma – including patients, survivors, family members and caregivers, health professionals, and researchers.
Press release from CRRAB
Jay is a 31 year old bilateral retinoblastoma survivor who wasn’t aware of the possibility for involvement in retinoblastoma research, let alone its benefits. When he and his wife started family planning, they worried about the health of their future baby. With the help of his doctor, he was introduced to an opportunity for participation within the retinoblastoma research community.
“It’s quite fulfilling being part of something larger than myself – especially in enabling families to know that they’re not alone, learning more about retinoblastoma, and continuing to learn more every day!” – Jay
This is just one example of the benefits of patient involvement in research.
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.
- ‘Primary’ here means cancer that originated in this part of the body, rather than spreading from somewhere else. Leukemia that has spread to the eye, for example, is more common in children than retinoblastoma.
- Abramson DH, Schefler AC, Dunkel IJ, et al. Pediatric Ophthalmic Oncology: Ocular Diseases. In: Kufe DW, Pollock RE, Weichselbaum RR, et al., editors. Holland-Frei Cancer Medicine. 6th edition. Hamilton (ON): BC Decker; 2003. Available from: https://www.ncbi.nlm.nih.gov/books/NBK12607/