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 aims to have patients work alongside researchers and health professionals to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes.
Along with Dr. Helen Dimaras, Ivana Ristevski is co-lead of CRRAB. She is a Parent in Research at The Hospital for Sick Children (SickKids), Toronto, Canada. When Ivana’s son was diagnosed with retinoblastoma at 3 ½ months old, she was not in the medical field, but she knew she wanted to better understand retinoblastoma not just for herself but also to teach her son about it and how to advocate for himself and connect him to the retinoblastoma community.
In 2017 Ivana and her family attended a conference called One RB World in Washington DC attended by doctors, researchers, health professionals, and other families which allowed families to learn and connect with each other. This meeting was hosted by WE C Hope, and organized by Marisa Gonzales and Dr. Jesse Berry MD, both of whom reside in Los Angeles, California. When the research team from SickKids gave a presentation describing their project to determine the Top 10 Retinoblastoma Research Priorities in Canada, she thought this was the right opportunity to voice the priorities that were important to her family as well as other families she met along her journey.
It was also at this meeting that she met Dr. Helen Dimaras from SickKids who manages multiple research studies in retinoblastoma ranging from genetics, psychosocial development, and future interventions. Helen was looking to create a permanent role for someone with lived experience on her team and after an extensive search effort, the Parent in Research position was launched and Ivana was a perfect fit!
One of the projects that Ivana has been involved is related to Priority #9: Pathway of Care. Ivana helped to lead a project with the aim to develop and evaluate a prototype of a patient-centred pathway of care based on the ‘Get Well Map’ concept, a form of child-centered medical communication. Using human-centred design Ivana led a workshop to introduce the concept of the ‘Get Well Map’ and develop some prototype stickers which would be used in a package to test out the Retinoblastoma Journey Map with newly diagnosed families. During the 2023 Retinoblastoma Research Symposium, Ivana co-led a workshop where participants worked on creating a plain language summary of the project. The findings from this project and the plain language summary will be shared in an upcoming publication.
Another project that Ivana has been working on are quarterly meetings called “Cup of Tea”. These meetings are similar to a journal club where they each discuss a journal article relating to retinoblastoma. The meetings are open to anyone who has personal or professional experience with retinoblastoma. The topic changes every quarter and past topic have included new treatments, outcomes, and follow-up. The information is presented by someone with lived experience with retinoblastoma and is supported by a researcher or health professional. The entire process is guided and coordinated by Ivana. She encourages all attendees to join in the discussion and share their experiences to help with better outcomes! The most recent “Cup of Tea” reviewed an article about the connection of chromosome 13q deletion and the relationship to chemotherapy related toxicities. The video can be found on the Retinoblastoma Research YouTube channel and the podcast can be found on Spotify.
CRRAB and KTG agree that early detection is important. Early detection is the #1 Priority of the Top 10 Retinoblastoma Research Priorities in Canada and at KTG we are excited about this aspect of CRRAB’s work and we look forward to sharing about their efforts and studies as well as finding new ways to collaborate with Ivana and her team on this important initiative!
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Here are some links to the CRRAB activities and Dr. Helen Dimaras’ Lab.