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2022 Virtual Retinoblastoma Research Symposium
The 2022 Retinoblastoma Research Symposium was once again a success! While the COVID-19 pandemic prevented us from meeting in person for the second year, we were able to gather virtually on January 15, 2022 to grow together and advance patient-oriented retinoblastoma research in Canada. The symposium gathered many stakeholder groups including retinoblastoma patients, survivors, parents and other family members, researchers, and health professionals to connect with each other, learn about CRRAB and discuss the future of retinoblastoma research.
This year, the symposium was hosted on Gather, a web-conferencing software like Zoom, but with the added component of seeing the virtual “room” you and others are occupying, and with the ability to move an avatar and interact with other participants based on your locations in the room, just like real life.
CRRAB Birthday Celebration
Following initial mingling and a virtual icebreaker activity the first session of the symposium was a celebration! In December 2016 the Canadian Retinoblastoma Patient Engagement Strategy was launched, and the Canadian Retinoblastoma Research Community was created. CRRAB was then created to lead the strategy in order to share research results, include patients in research and promote research created by patients. This first session brought us through the history of CRRAB to celebrate its fifth year!
Self-Guided Information Rooms
The next session of the symposium allowed attendees to visit virtual rooms to asynchronously learn about various CRRAB tools, current research opportunities, and hear from our partners.
Retinoblastoma Research Community Room
Finding a diverse, representative group of retinoblastoma patients is at the cornerstone of having an effective national patient engagement strategy. To address this, we developed the Canadian Retinoblastoma Research Community.
This information room spoke to the many benefits of joining the Retinoblastoma Research Community. A feature of the session was the changes made to Community registration in 2021 that now allows non-patients (i.e., health professionals, researchers and advocates) to join as well as the expansion to include individuals from all over the world. You can join the registry here or if you are unsure if you’ve already registered you can email retinoblastoma.research@sickkids.ca.
CRRAB Website Room
The purpose of the CRRAB website is to inform the public of upcoming CRRAB events and ongoing research recruit members to the Canadian Retinoblastoma Research Community. Over the past few years our website team has used an iterative process to add new sections and improve the site to meet the needs of our group.
Serge Dorna, retinoblastoma parent and CRRAB member, highlighted the importance and usage of CRRAB’s website in a room dedicated to the topic. The room displayed the many improvements made to the website during 2021 including the plain language article summary page and the Retinoblastoma Research and You! Booklet page. Many suggestions for further website upgrades were also given. If you have any suggestions for our website or are interested in helping make improvements please contact retinoblastoma.research@sickkids.ca.
CRRAB Social Media Room
The purpose of CRRAB Social Media is to engage with a multidisciplinary group of stakeholders to increase participation in CRRAB and enrolment in the Canadian Retinoblastoma Research Community. Over the last few years CRRAB has assembled a small team of volunteers to continually develop content for our social media platforms (currently Twitter, Facebook, and Instagram).
This information room outlined the history of CRRAB’s social media presence. Recent improvements were presented including increased post quantity, engagement of external organizations and the initiation of the Instagram takeover series. If you are interested in joining the CRRAB social media volunteer team, please contact retinoblastoma.research@sickkids.ca and please continue to share CRRAB posts to your social media accounts!
Retinoblastoma Journey Maps Project Room
The Retinoblastoma Journey Maps project was developed to address Retinoblastoma Research Priority #9, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Based on the “Get Well Maps” concept the Retinoblastoma Journey Map is a patient-centred pathway of care developed with the help of retinoblastoma survivors, parents, researchers, and health professionals. The Retinoblastoma Journey Map was tested with a small group of families over the course of six months via a quality improvement project at SickKids.
This information room provided an update on the project, which is currently in the data analysis phase, and asks that CRRAB members attend the Project Workshop on Saturday, April 9 at 12PM ET to discuss and interpret the project’s results. Email retinoblastoma.research@sickkids.ca for more details on the project and the upcoming workshop.
Canadian Retinoblastoma Research Society (CRBS) Room
The Canadian Retinoblastoma Society is a registered charity run by a team of committed volunteers to provide education, advocacy and peer support to Canadians touched by Retinoblastoma. Genevieve Savoie, CRBS president, hosted an information room to supply background on the group and discuss upcoming CRBS community calls and other events. For more information on CRBS please visit rbsociety.ca.
CRRAB Annual General Meeting
The symposium then moved onto its foundation, the CRRAB Annual General Meeting. The meeting reviewed CRRAB’s purpose and structure, 2021 goals, challenges, and accomplishments.
Attendees then worked to develop CRRAB’s goals for 2022 aligned with the aims of the Canadian Retinoblastoma Patient Engagement Strategy:
1. “How can we share research results with people affected by retinoblastoma?”
- Create 4 written plain language summaries of scientific articles (one per quarter) to be shared by social media through unique posts, quarterly newsletter, and housed on the CRRAB website.
- Host 4 new “Cup of Tea” virtual journal club events as an opportunity to discuss research in plain language, following the format successfully implemented in 2021.
- Create video recordings of “Cup of Tea” events for wide distribution.
- Transform “Cup of Tea” event recordings into podcast episodes for wide distribution.
2. “How can we include a large and diverse group in CRRAB?”
- Enroll 12 newly diagnosed families to the Canadian Retinoblastoma Research Community.
- Enroll 10 additional families to the Canadian Retinoblastoma Research Community.
- Recruit a Francophone patient and health professional to join CRRAB.
- Enroll one patient family from Quebec to the Canadian Retinoblastoma Research Community.
- Develop a Standard Operating Procedure to guide health professionals through sharing CRRAB resources with newly diagnosed families.
Everyone is encouraged to contribute towards actualizing these goals. Attend a Monthly Working Group meeting to see how you can contribute.
Monthly Working Group Meetings
Wednesday Monthly Working Group meets on the 2nd Wednesday of each month at 12:00 PM Eastern Time.
Saturday Monthly Working Group meets on the 2nd Saturday of each month at 12:00 PM Eastern Time.
Email retinoblastoma.research@sickkids.ca for information on how to attend this meeting or to learn how you can contribute offline.
Networking
The symposium offered brief breaks to allow for attendees to meet each other, connect with old friends and make new ones. The use of Gather as a platform afforded everyone the opportunity to move freely throughout the virtual space and strike up conversation at will. Much like our in-person events, members from different backgrounds, patients, health professionals and researchers could converse, make connections, broaden their networks and strengthen the bonds of our community.
Child Life Session
Morgan Livingstone, CCLS
During the Child Life Session at this year’s Retinoblastoma Research Symposium children were guided through a specialized activity while adult attendees were welcome to attend to learn more about the importance of effective coping through play, preparation and education, by Certified Child Life Specialist Morgan Livingstone.
In the session children were led through the creation of a self-expression booklet. Children created an “I Am, I Can, I Wish” booklet that asked them to think about fun facts about themselves and how to express it. Children discussed their wishes and what makes them unique through this creative activity that asks them how they see themself in the world.
If you missed the opportunity to have your child complete the activity at the symposium you can download the instructions and worksheets below.
Priority Research Project Breakout Sessions
In the next session of the symposium attendees broke out into smaller groups to learn more about projects under way addressing four of the Top Retinoblastoma Research Priorities.
Retinoblastoma Research Priority #1: Early Diagnosis Breakout Session
Dr. Sandra Staffieri & Dr. Ashwin Mallipatna
Introduction:
Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?” The importance of this priority is clear as earlier diagnosis of retinoblastoma leads to better outcomes and requires less intensive treatment for patients.
At the 2020 and 2021 Retinoblastoma Research Symposia research workshop attendees outlined the steps required to obtain a retinoblastoma diagnosis in Canada. The groups then discussed the barriers that could appear at each of these steps that could delay the process of getting a diagnosis for a child. The members of these workshops formed a Working Group, comprised of patients, researchers and health professionals that has been developing projects designed to assess and address Priority #1.
Summary of Session:
Session leaders reviewed the pathway to retinoblastoma diagnosis outlined by past workshop members and invited suggestions for refinement. Attendees also discussed the work underway by other groups globally that are also aimed at addressing this priority and understand whether there is a possibility for collaboration. Leads of the working group projects then presented their progress on each study.
Suggestions from this session include:
- Reach out to those leading projects aimed at improving early diagnosis globally to expand or replicate these efforts in Canada.
- Develop a study examining the clinical curriculum taught in Canada for retinoblastoma.
- Work with advocacy groups around the world to translate the surveys being used in the study investigating barriers to retinoblastoma diagnosis.
- Develop awareness campaigns aimed at early childhood educators and childcare centres.
Next Steps:
The projects generated around this priority continue to be developed by the Priority #1 Working Group which meets regularly. To join us the next meeting please contact us at retinoblastoma.research@sickkids.ca.
Retinoblastoma Research Priority #2: Second Cancer Screening Breakout Session
Dr. Stephanie Keltke & Ivana Ristevski
Introduction:
Retinoblastoma Research Priority #2 asks, “What second cancer screening is optimal for heritable retinoblastoma survivors (including whole body magnetic resonance imaging)?” Approximately 45% of retinoblastoma patients have the heritable form of retinoblastoma which increases the risk of second cancers later in life. In order to diagnose second cancers, effective screening protocols need to be created and evaluated. Currently, there are no evidence-based screening guidelines.
This session proposed a new study to evaluate the effectiveness of molecular screening of blood for early second cancer detection in survivors of heritable retinoblastoma.
Summary of the Session:
Participants in this study discussed the idea of the study and through this discussion, the research team was able to simplify the scientific objectives and rationale such that attendees had a very clear idea of the project’s background, aims, potential impact on the retinoblastoma community.
Once a clear understanding of the project was established, participants discussed recruitment for research participants. Patient partners shared insight into where they connect with other retinoblastoma families and where they get information about retinoblastoma including social media and other cancer or retinoblastoma organizations. Non-patient partners offered input into reaching patients through professional organizations and retinoblastoma clinics. Members of CRRAB were also able to reference past CRRAB projects and share what has worked when recruiting for studies in the past.
Next Steps:
The feedback will be used to develop a study recruitment strategy and plain language summary of the project. A new working group will be formed and regularly meet to discuss the next steps of the project. To join this working group please email retinoblastoma.research@sickkids.ca.
Retinoblastoma Research Priority #3: Psychosocial Support Breakout Session
Kaitlyn Flegg, Efy Zouridaki, Polina Kargapolova
Introduction:
Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents, and families (at diagnosis and beyond)?” In 2017 focus groups of retinoblastoma families found that psychosocial support is largely missing from care. Additionally, research has consistently demonstrated that Canadian retinoblastoma patients, parents, and survivors desire more psychosocial support.
In 2018 a CRRAB working group co-designed a study to address this priority area. Despite five grant applications, funding has not yet been secured for this project. Therefore, a scaled-back study version of the project was proposed, focusing on determining supportive care needs and distress of retinoblastoma parents and survivors.
Summary of the Session:
Participant recruitment for this study will begin in the summer of 2022. A robust recruitment plan is a central part of this project as we aim to accurately characterize the needs of a diverse group of retinoblastoma, parents and survivors. In the session, attendees were asked to provide feedback on the social media study recruitment materials developed. Attendees emphasized the importance of conveying the value of this study as an essential component of participant recruitment. Patient champions were suggested as potential co-leaders to expand recruitment efforts.
Suggestions from the session included:
- Simplify language used in social media recruitment materials to better convey study purpose.
- Highlight the importance and impact of the project by relating it to a top research priority.
- Ensure best practices for social media accessibility are employed (I.e., concise wording, acceptable colour contrast, use of alternative text).
Next Steps:
Feedback will be used to improve study materials. The progress of study development will be shared at the CRRAB Monthly Working Groups.
Retinoblastoma Research Priority #11: Novel Agent Breakout Session
Roxanne Noronha
Introduction:
While CRRAB places a focus on the top 10 retinoblastoma research priorities, during the initial priority setting exercise in 2017 a total of 30 priorities were ranked. Priority #11 states asks for more clinical trials of novel agents, targeted agents added to “backbone” chemotherapy, or intra-arterial chemotherapy to improve eye-salvage rates be conducted. In order to reach the stage of conducting clinical trials, novel agents must first be tested in models or samples. Therefore, a robust collection of biological samples from patients are needed to conduct this research.
The SickKids Department of Ophthalmology Biobank was launched in 2020 with the objective to collect and store biological samples and associated data relevant to vision and eye health and make this available to researchers conducting studies.
Summary of the Session:
This session highlighted the importance of biobanking by underscoring the fact that conducting research using resource developed by the biobank allows us to learn more about how retinoblastoma works which may provide insight on how to identify it and treat it more safely to ultimately improve patient outcomes. Session attendees were then asked to consider two main questions related to participant recruitment and patient engagement in research.
When discussing how to improve the process of recruitment it was suggested that foremost the research team must be cognizant of the stress a family with a new diagnosis is under and to tailor the recruitment activities around the needs of the family. Then, when discussing the sample access process for researchers and what study qualities are important to patients it was clear that studies that most directly impact patient outcomes should be prioritized and that researchers must have a strong scientific rationale for conducting the study with the banked samples.
Next Steps:
Study activities for this project are ongoing. Feedback will be used to revise study materials to improve study recruitment and increase patient engagement. If you are interested in supporting this project please email dovs.biobank@sickkids.ca.
Thank You
We would like to thank everyone who supported and attended the 2022 Virtual Retinoblastoma Research Symposium. Without your active involvement we are unable to build patient-oriented retinoblastoma research!
