The 2024 Retinoblastoma Research Symposium was a huge success! On April 20 & 21, 2024 the retinoblastoma community gathered to learn from each other, connect with their peers, and advance patient-oriented retinoblastoma research.
This year marked the first multi-site in-person locations for the event in Vancouver, Toronto, and Halifax as well as online. Katherine Paton, Ophthalmologist, hosted the Vancouver location. Helen Dimaras, Scientist, hosted the Toronto location. Bruce Crooks, Oncologist, hosted the Halifax location. Together with a team of volunteers at each location, we welcomed 64 in-person and 34 virtual attendees.
**Recordings of the sessions are all available on our YouTube channel “Retinoblastoma Research”. You can access the playlist here.
Keynote Presentations
Jay Kiew
To kickoff the event, Jay Kiew gave an engaging and thoughtful presentation which shared a deeply personal and inspiring journey of resilience and finding joy during the most challenging times. Drawing from his own experiences as a retinoblastoma survivor and a change navigation strategist, Jay highlights the power of community, the importance of nurturing wonder and possibility, and how shifting our perspectives can help us overcome adversity. Drawing inspiration from the Wright brothers’ pursuit of flight and his own experiences as a retinoblastoma survivor, Jay encourages the audience to connect with one another, explore the realm of the possible, and evolve their vision for the future, even in the face of life’s toughest challenges.
Mari Somerville
On day 2 of the symposium, Mari Somerville discusses the importance of patient-oriented research and the benefits of engaging youth in the research process. Marie shares her experience in a research project called “Educate” where they co-designed discharge communication tools for the pediatric emergency department with clinicians, parents, and youth. Mari’s presentation highlights the challenges and opportunities encountered in this co-design process, emphasizing the valuable insights and perspectives that youth brought to the research. Overall, Mari encourages researchers to actively engage youth in research studies, providing strategies and recommendations for meaningful youth involvement.
Multidisciplinary Panels
Ask the Health Professionals About Retinoblastoma
Speakers: Jonathan Bush, Bruce Crooks, Katherine Paton, Aparna Ramasubramanian
Jonathan Bush, a pediatric and perinatal pathologist described the critical work that pathologists do in examining and assessing retinoblastoma specimens. He explained the detailed process of examining the enucleated eye, including macroscopic and microscopic evaluation to identify key features that guide treatment decisions. Jon also highlighted exciting areas of pathology research, such as the use of digital imaging and machine learning to enable more sophisticated analysis of tumor samples.
Bruce Crooks, pediatric oncologist and host of the Halifax location of the symposium, provided an overview of the Children’s Oncology Group’s research efforts, including trials evaluating chemotherapy regimens and the “Molecular Characterization Initiative” that uses comprehensive genetic profiling to identify personalized treatment approaches.
Katherine Paton, ophthalmologist and host of the Vancouver location of the symposium, emphasized the importance of the Tumor Board in ensuring equitable access to expert care, no matter where a patient is located in Canada. She describes how the Tumor Board facilitates multidisciplinary discussion, second opinions, and coordinated decision-making to provide the highest quality, evidence-based care.
Apart Ramasubramanian, shared the exciting progress being made with chemotherapy plaques, a targeted local therapy that delivers chemotherapy directly to the eye. She also shared results from a phase 1 clinical trial, which shows the potential of this approach to effectively treat retinoblastoma with minimal systemic toxicity. She emphasizes the importance of this type of localized, affordable treatment, especially for patients in low-resource settings.
Ask Patient Partners About Patient Engagement in Research
Speakers: Ella Bowles, Michelle Prunier, Lynn Tarabey, Ivana Ristevski
Ella Bowles, retinoblastoma patient, explains how DepictHealth can anchor the circle of care and provide patients with a view of the entire care team and can enable research on retinoblastoma research priorities such as second cancer screening, optimal follow-up, and prospective treatment studies.
Michelle Prunier, retinoblastoma survivor, discussed her involvement in research, advocacy, and her current role as a patient partner advising on the development of a patient-reported outcome measure for retinoblastoma patients. Michelle’s role involved ensuring the questions were comprehensive and understandable, particularly for younger patients, and that the content reflected the diverse experiences of retinoblastoma patients.
Lynn Tarabey, retinoblastoma survivor from Lebanon, discusses her involvement with the Rare Pediatric Eye Cancer (RPEC) biobank and the importance of patient advocacy and engagement in research. The biobank is a facility that collects and stores high-quality data on childhood eye cancers, including biological samples, health information, and medical images. Lynn highlights the RPEC biobank’s Patient Advocate Committee, which provides a platform for patients to engage with and contribute to the process.
Ivana Ristevski, parent of a retinoblastoma survivor, shares her experience in developing and testing the Retinoblastoma Journey Map, a tool designed to help patients track their care and share their medical history on a fun and engaging board with retinoblastoma specific stickers. Her son, Nikola, presented his board and explained how he uses his Retinoblastoma Journey Map to track and talk about his retinoblastoma journey.
Research Workshops
Early Diagnosis: Understanding How 3D Eyes Can Help
Facilitators: Ashwin Mallipatna and Jillian Purdy
The workshop discussed the use of a 3D-printed model of a baby’s eyes to help train general practitioners on performing the red reflex test for early diagnosis of retinoblastoma. The goal of the workshop was to determine how to encourage more frequent and proper use of the red reflex test by general practitioners. For next steps, the workshop leads are looking for a patient partner to help promote the use of the 3D-printed model and gather feedback on its potential
Psychosocial Care: Understanding Patient Needs
Facilitators: Kaitlyn Flegg and Marissa Gonzalez
The workshop explored preliminary research on psychosocial impacts and distress experienced by patients and parents to critically analyze the findings. The next steps involve planning focused groups to refine the questions for a larger survey to better understand psychosocial needs.
Understanding Your Genetics: Co-Creating Educational Tools
Facilitators: Helen Dimaras and Mitch Hendry
The workshop initially focused on improving genetic test reports, but the discussion expanded to exploring the potential for video-based educational resources. The plan is to create a series of videos featuring individuals with different genetic diagnoses sharing their stories, which could then be expanded to cover various aspects of the genetic testing journey.
Patient Reported Outcome Measures: Communicating How You’re Doing
Facilitators: Farheen Khan and Ivana Ristevski
The workshop discussed a project to create a patient-reported outcome measure (PROM) questionnaire, focusing on the “eye appearance” section and providing feedback on the relevance of the questions. The next step is to gather 200 participants to fill out the questionnaire, which will help refine the tool and make it more valuable for facilitating discussions between patients and clinicians.
If you are interested in partnering on any of these research projects, please email retinoblastoma.research@sickkids.ca and let us know which project you are interested in. Those who attended the workshops will already be on the contact list and will receive project updated and meeting invitations.
Child Life Program
A Children’s Program was offered at all three locations for the children of the attendees of the symposium. This program allows the adults to attend the main program while their child(ren) are engaged in an interactive and medical play based program.
Morgan Livingstone, Certified Child Life Specialist and planned the overall program structure which included the designing of “my special eye” and led the program with her team of volunteers in the Toronto location. The children attending participated in activities such as creating a giant game board, building structures out of legos, reading books about retinoblastoma and relaxing with a bucket full of sensory toys.
Ashley Tolerton and Megan Weibe, both who are Certified Chid Life Specialists led the program in the Vancouver location. The children attending participated in activities such as painting outdoor in the garden, colouring, sensory play with various objects, and medial play.
The Halifax location kept their participant occupied with many physical and relaxing activities.
We encourage all our in-person attendees with child(ren) to bring them to the next symposium so they may interact with other retinoblastoma patients, siblings, and other non-affected children of our researchers and health professionals.
Thank You
We would like to thank everyone who attended the 2024 Retinoblastoma Research Symposium and all our volunteers and funders who made this event possible. Without your commitment and involvement, we would be unable to support patient-oriented RB research!
