The 2023 Retinoblastoma Research Symposium was once again a success! In our first hybrid symposium on January 28 – 29, 2023 we gathered the community both in-person and virtually to grow together and advance patient-oriented retinoblastoma (RB) research in Canada. The symposium gathered many stakeholder groups including RB patients, survivors, parents, other family members, researchers, and health professionals to connect with each other, learn about CRRAB, and discuss the future of RB research.
Keynote Presentations
Terry Kelly
To kick off the first day of the symposium Terry Kelly gave a riveting keynote presentation. As an RB survivor, Terry spoke of his experience with RB and blindness, through the combination of storytelling and music. Terry shared the numerous challenges he faced from childhood through to his adult life and explained how he relied on his loved ones and learned to adapt in order to find solutions. For example, Terry and the rest of his classmates at the Halifax School for the Blind, had the opportunity to play hockey by altering their equipment to add buzzers to their nets or using a can can filled with marbles as a puck. In sharing his life experiences, Terry motivated us to look at our lives with a new perspective. Through his song Celebrate Life Terry sang about being not only a cancer survivor but also being a survivor that thrives throughout their life.
Dr. Francine Buchanan, MLIS, PhD
The second day of the symposium began with a keynote presentation by Francine Buchanan. Francine works at SickKids as the Research Patient & Family Engagement Coordinator, to ensure that patients and families have the opportunities to partner with researchers in pediatric research. She shared how her initial motivation behind her work started when her son, who faces several medical complications, was born. During her presentation, Francine discussed some of the common barriers to patient engagement in research and expounded on the various complexities of incorporating patient engagement into a project. However, despite these perceived difficulties, Francine highlighted the importance of patient engagement in research and how including the patient voice provides added depth through their valuable expert insight gained through their personal experiences.
CRRAB Annual General Meeting
The Seventh Annual CRRAB General Meeting provided a forum to review the goals and accomplishments of previous years, reflect on the lessons learned from the past, and to develop a plan for 2023. During the meeting, existing CRRAB members came together with the broader RB community to learn more about CRRAB and set goals for 2023.
The goals of CRRAB are designed to be aligned with the three main aims of the Canadian Patient Engagement Strategy. Each year, goals are set to help move the aims forward. In 2023, CRRAB decided to focus on one main goal per aim, as follows:
Strategy Aim 1: Include a large and diverse group in retinoblastoma research.
2023 Goal: Collate metrics about size and composition of the Retinoblastoma Research Community, and share, in a simple and user-friendly format, with CRRAB members in each quarter of 2023.
How does this goal help support Strategy Aim 1? By knowing details about who is already enrolled in the Retinoblastoma Research Community, we also learn who is missing. Knowing who is missing will inspire new strategies to assist in reaching the under-represented.
Strategy Aim 2: Share research results.
2023 Goal: Identify and train four pairs of patient- and non-patient partners to lead a “Cup of Tea” event producing a plain language summary, video recording and podcast, each covering a RB research article, in March, June, September and December of 2023.
How does this goal help support Strategy Aim 2? The “Cup of Tea” has proven successful in gathering a large group to discuss important RB research in a way that makes it accessible to non-researchers. By continuing this program, we share more research results, and as it grows, it will reach a larger audience.
Strategy Aim 3: Promote patient-partnered research.
2023 Goal: Raise awareness and facilitate participation of patients, researchers, and health professionals. CRRAB members in project-specific patient partnerships aimed at solving the Top 10 Retinoblastoma Research Priorities, by end of 2023.
How does this goal help support Strategy Aim 3? By raising awareness about and linking CRRAB members to research teams aiming to solve the Top 10 Retinoblastoma Research Priorities, the resultant research will incorporate lived experience and lead to higher quality results.
Multidisciplinary Panels: Discussing Top 10 Retinoblastoma Research Priorities
Priority 2
Speakers: Mary Connolly-Wilson, Dr. Stephanie Kletke, Dr. Trevor Pugh
Retinoblastoma Research Priority #2 asks, “What second cancer screening is optimal for heritable RB survivors?”. Approximately 45% of RB patients have the heritable form with those affected having a greater risk of second cancers later in life, as well as the risk of RB being passed on to their children.
The panel began with Trevor Pugh, cancer genomics researcher, who gave an overview of his project that uses circulating tumour DNA (ctDNA) from blood samples from patients with hereditary cancer syndromes to detect cancer. He ended his presentation with an example from a neurofibromatosis type 1 (NF1) patient for which their leukemia was detected earlier via the ctDNA monitoring compared to conventional surveillance by whole body MRI. The next speaker, Stephanie Kletke, pediatric ophthalmologist, explained the risk of second cancers for hereditary RB survivors and reiterated the need for non-invasive early second cancer detection. She then summarized her proposal for a clinical trial to determine the feasibility of cell-free DNA liquid biopsy to detect second cancers in heritable RB. To close out the panel, Mary Connolly-Wilson, genetic counsellor and family member to RB survivors, provided her personal and professional opinion on the topic. Mary shared her family’s experiences with second cancers and underlined the need for effective screening protocols for heritable RB survivors.
Priority 4
Speakers: Dr. Ella Bowles, Dr. Bruce Crooks, Dr. Ashwin Mallipatna, Marg Macfarlane
Retinoblastoma Research Priority #4 asks, “What is the optimal follow-up for heritable RB patients and survivors and how can we ensure this is provided to all?”. Heritable RB survivors have increased risks of recurrent RB in childhood and second cancers later in life, as well as the risk of passing the RB1 pathogenic variant to their children. These risks correspond to the need for standardized plans for adult follow-up of heritable RB survivors, which do not currently exist.
Bruce Crooks, pediatric oncologist, started the panel presentations by giving an overview of the concepts of long-term follow-up and survivorship. He underscored the idea that all aspects of a cancer survivor’s health and well-being from diagnosis to end-of-life should be included in survivorship and presented the trajectory of care from diagnosis to active treatment, to follow-up and surveillance, to long-term follow up. Next, Ashwin Mallipatna, pediatric ophthalmologist, presented follow-up in terms of care for the eye. He explained the various factors that play a part in deciding on eye follow-up including, age, laterality and genetics, treatment received, and other complications. The next presenter, Marg Mcfarlane, family member of RB survivors, provided her lived experience of RB, explaining the self-screening her affected family members were informed of and detailing the lack of protocol for follow-up in her family. Finally, Ella Bowles, RB survivor and scientist, presented by sharing her RB story and highlighted her struggles to access the appropriate follow-up care as an adult.
Priority 5
Speakers: Dr. Furqan Shaikh, Dr. Helen Dimaras, Dr. Brenda Gallie, Jillian Purdy
Retinoblastoma Research Priority #5 focuses on new treatments for RB, and in particular, prospective studies that have long-term follow-up. These prospective studies help us better develop new treatment methods for RB and allow us to determine their impact on patient outcomes.
The panel started with Furqan Shaikh, a pediatric oncologist, sharing the history, current standards, and future directions of RB treatments. Then, Helen Dimaras, scientist, and Brenda Gallie, ophthalmologist, shared updates of their current research studies. Helen presented the development of a new biobank at SickKids, with the purpose of providing other researchers the resources to conduct research on RB and other pediatric eye cancers. In addition, Helen discussed the status of a North American multi-site study, looking at the long-term health outcomes of RB patients. Brenda followed by sharing some exciting results of her clinical trial that tests the “chemoplaque” a device that is glued directly to the eye to deliver sustained-release chemotherapy directly to the affected eye. Finally, Jillian Purdy, a parent of a child with RB, shared her family’s experience of her son participating in Brenda’s chemoplaque clinical trial, and the importance of new treatments for RB from a parent’s perspective.
Ask the Experts
Speakers: Dr. Marie-Anne Brundler, Dr. Hallie Coltin, Beverley Griffiths, Terry Kelly, Matthew Milne, Alissa Ulster, Rose Venier
The ‘Ask the Experts’ panel consisted of a wide range of experts including a pathologist, oncologist, nurse, RB survivor, ocularist, social worker, and genetic counselor. The panelists answered questions from attendees on various topics such as, “What steps does pathology take from when the tumor is collected to when a patient receives the results?”, “What are the new technologies being used in making prosthetics?” and “How should family’s receive clinical information?”. All the experts on this panel play an important role in supporting the patient and family. If you have any questions about your care or about RB, talk to your RB care team.
Research Workshops: Opportunities Across the Research Lifecycle Related to the Top 10 Retinoblastoma Research Priorities
Retinoblastoma Research Priority #1: Early Diagnosis
Facilitators: Dr. Ashwin Mallipatna, Ana Janic, Bronte Lim
Background:
Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma?”. We know that earlier diagnosis of RB leads to improved health outcomes and less intensive treatment.
Session Summary:
This year’s workshop on Priority #1 began with an overview of early detection of RB by Ashwin Mallipatna. He then introduced thetopic of red reflex exams (RRE), examinations of pupil reflections that can reveal problems in the eye which is particularly useful in young children, and its role in decreasing age at diagnosis for RB. We then heard from two families and their lived experiences with RB, providing important insight into the difficulties of obtaining an RB diagnosis in Canada. This highlighted the need for improved RB awareness in both new parents and health professionals.
Next, we heard from Ana Janic, medical student, discussing her project – an in-depth review of the literature on RRE. Ana’s goal is to determine the gold standard method for conducting a RRE, which will help promote RRE education amongst health professionals, thereby facilitating early RB detection. This education is vital, as improperly administered RREs can lead to false positives and false negatives, delaying RB diagnosis.
Lastly, the workshop participants brainstormed the creation of an informational pamphlet on RB and RRE, aimed at parents and health professionals. This pamphlet will not only raise RB awareness, but also empower self-advocacy in parents suspecting eye concerns in their children.
Next Steps:
If you would like to contribute to the development of the pamphlet or participate in future priority #1 working group meetings and workshops, please email us: retinoblastoma.research@sickkids.ca.
Retinoblastoma Research Priority #9: Pathway of Care
Facilitators: Ivana Ristevski
Background:
Retinoblastoma Research Priority #9 asks, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Currently, there is no uniformity in how patients receive information about their care; therefore, having a pathway of care may help families adhere to treatments, alleviate distress, and improve patient outcomes.
Session Summary:
Since our last research workshop during the 2020 Retinoblastoma Research Symposium, the work on the project “Retinoblastoma Journey Map” has been ongoing. During this year’s research workshop, the results of the testing of the Retinoblastoma Journey Map were shared with the group. Project leads Ivana and Helen also provided an update on the status of the article which is being written about the project. The aim of the workshop was to use the article’s scientific abstract to draft a plain language summary. The participants read through the scientific abstract together and identified terms and ideas that they felt were necessary to include. Ivana then led a discussion on how to describe the terms and ideas in plain language and the group created a first draft of the plain language summary.
Next Steps:
The attendees of this workshop will be invited to review the completed draft. If you are interested to review the plain language summary, please contact us: retinoblastoma.research@sickkids.ca.
Celebrating Our Progress Towards Solving the Top 10 Retinoblastoma Research Priorities
It has been five years since the pan-Canadian priority setting exercise to determine the Top 10 Retinoblastoma Research Priorities was completed. These priorities were created with the aim to align research that is most relevant and valued by patients and health professionals with the funding that is available.
During the last five years, progress has been made through the CRRAB-supported project-specific working groups to address three of the 10 research priorities:
- Priority # 1: Early Diagnosis
- Priority # 3: Psychosocial Support
- Priority # 9: Pathway of Care
Working Groups
The working groups, with the support of CRRAB who facilitates patient partnerships, meet as needed. The working groups include a diverse group of participants including patients, researchers, and health professionals. If you are interested in joining a working group, please email retinoblastoma.research@sickkids.ca to be invited to the next meeting.
Awards
A new addition to this year’s symposium was the awards ceremony to celebrate members of the RB community who have significantly contributed to CRRAB initiatives. Those recognized this year include:
Patient Champions
- Michelle Prunier
- Mary Connolly-Wilson
- Taline Dorna
Research Champions
- Dr. Jennifer Steeves
Health Professional Champions
- Dr. Katherine Paton
- Beverley Griffiths
- Alissa Ulster
Special Acknowledgements
- Serge Dorna
Partnership Award
- Canadian Retinoblastoma Society
Child Life Session
Morgan Livingstone, CCLS
Hosted by Certified Child Life Specialist, Morgan Livingstone, child life activity sessions took place during both days of this year’s Retinoblastoma Research Symposium. Children participating in-person and virtually were guided through specialized activities while adult attendees could observe and learn more about the importance of effective coping through play, preparation, education, and creative self-expression.
During Saturday’s session, the children made ’EYE am Special’ prosthetic eyes, during which they used household items (stickers, magazine clippings, and markers) to design unique prosthetic eyes to represent themselves in an activity that relied on the use of their creativity . On the second day of the symposium, children were led through a puppet making activity. Each child made a personal puppet and then had the opportunity to shared the unique features and qualities of their puppets to the group.
If you missed the opportunity for your child complete these activities at the symposium, you can download the instructions and worksheets here.
Canadian Retinoblastoma Research Society (CRBS)
The Canadian Retinoblastoma Society is a registered charity run by a team of committed volunteers, whose mandate is to provide education, advocacy and peer support to Canadians touched by RB. For more information on CRBS please visit rbsociety.ca.
Survivor Panel Discussion
Genevieve Savoie, CRBS president, moderated a panel discussion with RB survivors Jennifer Baca, David Schefter, and Natalia Frasunkiewicz-Watson. The session began with an explanation of CRBS’ mission and values. Next, each panelist had the opportunity to share their own personal story. The session concluded with audience question-and-answer which led to discussions around topics including family dynamics, RB support, genetics, and more.
Gathering
On day two of the symposium CRBS founder Lisa Simson shared her experience of having a child affected by RB. Throughout the 1980s and 1990s, without any existing support networks for families, Lisa formed the Retinoblastoma Family Association that held meetings, created newsletters, hosted fundraisers and shared survivor stories. Brian Cohen, CRBS Secretary-Treasurer, then discussed the transition from the Retinoblastoma Family Association to the Canadian Retinoblastoma Society over the past three decades.
Thank You
We would like to thank everyone who attended the 2023 Retinoblastoma Research Symposium. Without your commitment and involvement, we are unable to support patient-oriented RB research!
