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2020 Retinoblastoma Research Symposium

The annual Retinoblastoma Research Symposium once again proved to be a resounding success! Held on January 25 and 26, 2020, the symposium gathered patients, survivors, family members, researchers, and clinicians to learn from each other, connect with their peers, and discuss the future of retinoblastoma research and advocacy.

Family Gathering

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The first event of the weekend was the Family Gathering which featured informative presentations from clinicians, researchers and patients. The first panel covered research and treatment updates, including information about new retinoblastoma research studies, a new treatment option and the work being conducted on updating the Canadian Retinoblastoma Guidelines. The next panel featured patient stories and allowed for engaging discussion between patients on their varied experiences and journeys. Following this, members of CRRAB spoke about patient involvement in research, highlighting the work completed and goals accomplished by the CRRAB working groups in 2019. The last panel of the morning was ‘Ask the Experts’ where healthcare professionals, representing physicians, nurses, ocularists, genetic counsellors social workers and an expert parent, were available to answer questions from attendees. Overall the panels of the Family Gathering succeeded in generating engaging discussion and sharing new information on retinoblastoma.

Following the general gathering, a Marketplace showcased the various services available to the retinoblastoma patient community. Concurrent to this was a new addition to the symposium agenda for 2020, the Adolescent and Young Adult Q&A and Networking session. This session, designed specifically for patients and survivors, allowed for confidential discussion of experiences related to popular topics including accommodations in post-secondary education and work force, family planning, and second cancer screening.

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Canadian Retinoblastoma Research Advisory Board Meeting

The afternoon consisted of the 4^th Annual Canadian Retinoblastoma Research Advisory Board (CRRAB) Meeting . The meeting reviewed our 2019 accomplishments and discussed new ideas to move CRRAB forward in 2020. With the goal to create meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes, a simplified governance structure was proposed. This new structure establishes: 

• project specific research patient partnerships when requested by researchers in order to help address a research priority 
• CRRAB tools to share information about research results and opportunities with the community 
• regional working groups to engage with the broader retinoblastoma community in order to recruit patients for registry as well as health professionals, researchers and patients for CRRAB 
  • Central/East Coast Working Group will meet on the 2nd Wednesday of each month at 12:00 PM EDT
  •  West Coast Working Group will meet on the 2nd Saturday of each month at 12:00 PM EDT

Through this structure CRRAB aims to meet new objectives in 2020. If you are interested in participating in one of the regional working groups, please contact: retinoblastoma.research@sickkids.ca for the ZOOM link information.

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Research Workshops

Following the Family Gathering and CRRAB meeting, Sunday’s symposium activities began with gentle morning yoga. Attendees were invited to be present and create space in mind and body ahead of the day’s research workshops.

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Priority #1 Research Workshop – Early Diagnosis

Author: Dr. Helen Dimaras

The 2020 Retinoblastoma Research Symposium saw a new Research Development working group come together, made up of patients, researchers and clinicians from Canada, Australia and the US. The group’s focus is on solving the #1 Retinoblastoma Research Priority in Canada: “How to increase early diagnosis of retinoblastoma (i.e., decrease age or stage at diagnosis)?”  The main objectives for the group over the course of one year will be to: decide on a research approach; identify additional team members for relevant expertise or specific tasks; identify relevant funding opportunities; design a research protocol; and complete a funding application. 

At the inaugural meeting, Working Group members participated in a brainstorming activity to break down the steps necessary for timely detection and diagnosis of retinoblastoma. They discussed various barriers that could impede timely detection and diagnosis at the public, family and medical level. The group decided to focus on 3 distinct research areas: 

1) Soliciting patient experiences to define real barriers and facilitators to early diagnosis; 

2) Examining technological approaches to leukocoria detection; and 

3) Improving medical competency in performing red reflex examinations. 

The Working Group will meet regularly online to refine the research approaches culminating in a final meeting at the 2020 One Retinoblastoma World Conference, where a research proposal and funding application will be finalized. 

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Priority #9 Research Workshop – Creating a Prototype of the Retinoblastoma Journey Map

Author: Ivana Ristevski

Retinoblastoma treatment is complex, and the treatment and follow-up plans for each patient may be different. Currently, there is no uniformity in how patient families receive information about their care; most families receive information through discussion with their healthcare providers, and some written, piecemeal information. One of the Top 10 Research Priorities raises this concern, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”.

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The Priority 9 Workshop was led by Parent in Research, Ivana Ristevski, and Child Life expert, Morgan Livingstone and included parents, survivors, clinicians, health professionals, and children. The main goal of the workshop was to develop a patient-centred pathway of care based on the ‘Get Well Maps’ concept, a form of child-centered medical communication.

Using the ‘Get Well Maps’, we talked about how families would use the map and which stickers we would need to create to accurately reflect the retinoblastoma journey. From this discussion we agreed upon the concept of the stickers and provided feedback to the illustrator to produce 10 prototypes. These prototypes capture special events in the retinoblastoma journey.

Ivana worked with the illustrator after the meeting to design the prototypes for the clinical stickers based on the feedback from the workshop. The illustrator then created designs which we would like to ask all CRRAB participants to provide some feedback on.

Please click on the link below to be directed to a questionnaire where you will be asked  to provide your feedback on several aspects of the RB Journey maps including sticker design, sticker description, and usability.  The questionnaire should take about 30 minutes to complete.

https://forms.gle/Hsak95Ha9kVDDEN6A

 Once we have your feedback, we will improve the RB Journey Maps prototype before it is  handed out to newly diagnosed families. The families will use the maps for six months and provide continuous feedback on their experience. The feedback provided will help us refine the package and create a proposal for scale-up and sustainability of the project at SickKids.

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Foundations of Patient-Oriented Research

Author: Francine Buchanan

There is nothing more invigorating than walking into a room of patients, families and researchers all keen to learn about how to partner together to make research better.  The group together was keen to learn about the history of patient engagement, why it should be done, and the values associated with doing it in an authentic manner.  But what filled me with such pride and joy was seeing the group working together to develop a list of their own best practices, ways that they want to and can partner together to make research better. Using their own experiences, from both partnership work already done and experiences from their own personal work, the group was able to build a list of practical tools, techniques and practices that they are able to bring to future engagement work.  Thank you all for attending the session and sharing your knowledge with others.

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Child Life Directed Children’s Program

Author: Morgan Livingstone

The Child Life Directed Children’s Program during the Symposium this year included a wide range of specialized activities and learning experiences meant to foster creativity, self-expression, fun, and bonding. With a wide range of activities offered over the two-day program, kids of all ages were busy!  

The medical play station had our favourite patient puppets, including puppet Kamau, Elli the Elephant and Dino the Dinosaur for us to examine and evaluate with our stethoscopes, otoscopes and medical equipment. This year we included a lab station with pipettes and vials to test samples under magnifying glasses and microscopes. Numerous prosthetic eyes were available for children to explore and handle using fingers or suction cups to foster greater comfort and skill in handling their own prosthetic eyes in their own self-care.

The most amazing addition to the medical play station this year was the co-created MRI machine that children and child life staff built out of “loose parts” using recycled boxes, pipe cleaners and a crawl tunnel. The creation of this MRI facilitated discussion about MRIs, what they are for, the noises they make, and strategies for staying still during an actual procedure. Children were able to practice laying still in our “MRI” while listening to simulated MRI sounds on the helpful app, Simply Sayin’.

Children were also able to read and enjoy the newest Child Life Prep book for children with Retinoblastoma and their families “My Prosthetic Eye: Visiting the Ocularist”, made by Certified Child Life Specialist Morgan Livingstone and Ocularist Child Life volunteer Rebecca Gallant.   We welcomed guest Matthew Milne, the local ocularist, for some fun creative arts activities. Matt helped each child make a special finger cast sculpture of their own fingers using the same plaster and alginate impression material he uses to make children’s prosthetic eyes! This allows the children to gain familiarity and confidence with the material, ask Matt questions about what he does when making a special eye, and build a friendship with Matt.

Another guest, Alexander Theodorou, from Neurofit, brought an awesome virtual reality game for each of the children to explore. This game was for all children, including those with monocular vision, and low vision. The games allowed the children to find and identify shapes and alphabet letters in mazes with settings, from easy to difficult, depending on age and stage of development.

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At our art station, the creative kids made so many individual and group art activities over the course of the program. From self-published books all about themselves, to group murals for the symposium, to personalized buttons, kids tried new materials and art mediums to express themselves in many creative ways. One of our BIGGEST projects, was a group board game! This huge board game included co-creating space, giving space to include positives and negatives about the children’s lives, family, friends, and treatment experiences. A positive space, such as, “I cleaned my room without being asked” resulted advancing a few spaces. A negative like “I talked back to my mom when I was angry” resulted in a missed turn or going back a few spaces. The group discussed and added tasks or actions for players to do if they land on certain spaces like sing a song or tell a joke. The game allowed children to think and talk about the negatives and positives they feel are important. 

Each child was able to make their own snow globe jars, marble painting, stress balls and slime! Our hands and our hearts were busy the whole time! Friendships were deepened and so much laughter shared too!

Huge thank you to our child life staff and volunteers: Alexx Friesen, Kim Zinc, Jocelyn Leworthy, Michelle Badajoy, Beth Nelson-Agne and Faiza Ali. This incredible program would not be possible without them!

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Overall the 2020 Retinoblastoma Research Symposium was well attended with numbers similar to that of the previous year.  However, we were lucky to see many new faces in attendance. One of these new families were the Worobecs. In describing her experience at the symposium Tricha, a parent of five-year-old retinoblastoma survivor writes, “It was not just resources that we attained at the symposium, we left with being empowered, connected, and most importantly hope in knowing that the essential research being conducted is coming from our voices from within the RB community. We left knowing that each one of us can make a difference through research engagement”. You can read more about the Worobecs’ experience in Tricha’s blog post.

Thank you to all who attended the symposium and shared your experience with the community. Thanks also to presenters, Child Life staff and volunteers who supported the event and allowed the 2020 Retinoblastoma Research Symposium to be a success.

ISGEDR 2019

At the end of August 2019, CRRAB was represented at the International Society for Genetic Eye Diseases & Retinoblastoma (ISGEDR) conference in Giessen, Germany. Ivana Ristevski (Parent in Research), Ana Janic, and Stephanie Nanos presented their posters on Patient Engagement research.

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If you’re on twitter, please feel free to check out presentations from our international colleagues with @isgedr or #ISGEDR2019.

Save the Date!

The fourth annual Canadian Retinoblastoma Research Symposium & Research Advisory Board meeting will be held in Toronto on
January 25 & 26, 2020.

The purpose of this free meeting is to bring together people affected by retinoblastoma (i.e., patients and families), health professionals, researchers, and policy makers to discuss retinoblastoma research.

More information about the meeting will be made available later.

Steeves Lab @ York University

For over 25 years, Professor Jennifer Steeves has been studying the long-term consequences of losing one eye early in life on behaviour and the brain. She began by asking seemingly simple questions like “How well can someone see when they have only one eye compared to someone with two?” This is an important question for a few reasons. First, when a person views the world with one eye rather than two, they lose about a ¼ of the visual field in front of them so their viewing landscape is essentially slightly smaller. Second, when viewing with one eye a person can’t take advantage of the perception of 3-dimensional depth from “stereopsis” where the brain is able to create 3D relief from the different perspectives that the two eyes have of the world. (This is the “jumping out” depth that you would see at an IMAX 3D movie.) Third, viewing with one eye means that you have half of the sensory information coming into your visual system.

The final consideration as to why it’s important to study vision in people with one eye is that the surgical removal of the eye (enucleation) for unilateral (one eye) retinoblastoma typically happens at a very young age since that is often when retinoblastoma is discovered. Why is this important? This is because vision is not mature when we are born and it takes many years (even decades) for different aspects of vision to mature to adult levels. The brain is not mature at birth and the parts of the brain that allow for vision are still developing and maturing. So the question becomes, how does vision mature when someone has one eye? Specifically, what happens to all of the brain cells in the visual parts of the brain that should have been receiving signals from the eye that was surgically removed? Do they just lie dormant or perhaps just die off or, are they taken over by the eye that remains in order to give it “superpower”?

Jennifer’s lab started off by examining how good vision is in those with with one eye compared to people with two. She compared vision to people with two eyes when they viewed with both eyes or when they viewed with one eye covered. The short story is that for the most part, vision with one eye is really very good, and in some instances, it is actually better than people who have two eyes, even with both eyes open! This was particularly the case for something called “contrast sensitivity” which essentially measures how well we can see fine detail that is very faint. Jennifer’s lab also examined how well people with one eye see motion in the world. This is where there were small shortfalls in the ability to see. People with one eye sometimes had minor difficulties with seeing how things move, although it doesn’t appear to affect daily life since it is very subtle. Her lab suspects that the parts of the brain that allow us to see motion may be developed on a similar timeline to and linked to the ability to see 3D depth. A lot of this research was done with Dr. Krista Kelly who is now a researcher at the Retina Foundation of the Southwest in Dallas, Texas where she is now studying amblyopia.

Jennifer and Krista then began asking questions like “What happens to all of those brain cells that would have been connected to the eye that was surgically removed?” They performed some brain imaging experiments using magnetic resonance imaging also known as MRI. They took some very high resolution images of the brain and essentially they found that some of the parts of the brain that are dedicated to vision are actually bigger than they should be given that they have only one eye. This indicates that the brains of people with one eye have actually rewired and taken over some of the cells in the visual parts of the brain that were disconnected from the eye that was surgically removed. This is also called “brain plasticity”. Jennifer and Krista think that having these “extra” when a person has one eye probably is what allows them to see so well! See for example Kelly et al., Neuroimage Clinical 2014 .

This led to some new questions, specifically “how well do people with one eye hear?” Working with Dr. Adria Hoover (left below), Jennifer’s lab showed that people with one eye are better able to locate sound in space. In a similar vein, Dr. Stefania Moro (right below) conducted a number of studies in Jennifer’s lab and she found that while people with two eyes often are susceptible to illusions where vision dominates over (or captures) hearing; people with one eye are less susceptible to these audio-visual illusions. One of these illusions is called the “McGurk Effect”. In this example, people look at a computer screen at a person is mouthing the vowel “ga” while the vowel “ba” is being played on a speaker. People with two eyes tend to hear a completely different (intermediate) vowel such as “da”. In the laboratory, Jennifer and Stefania showed that people with one eye are less susceptible to such distortions of hearing and that their hearing appears to be more reliable. An example of the McGurk effect can be seen in this video.

Most recently, Stefania and Jennifer are looking at how the visual and auditory parts of the brain function. They have done a number of functional MRI (fMRI) studies to look at how the brain functions when looking at visual objects and hearing different sounds. These results will be coming out soon so stay tuned! 

Overview: The CRRAB Working Groups

1.Patient Engagement Working Group

“Nothing about us, without us”

The CRRAB Patient Engagement Working Group (PEWG) aims to empower retinoblastoma patients to engage in research, to ultimately improve retinoblastoma patient outcomes. This group is made up of retinoblastoma patients, parents, researchers, and clinicians from across Canada who meet once a month to discuss how we can accomplish the goals of the Canadian Retinoblastoma Patient Engagement Strategy:

• Share research results with people affected by retinoblastoma (e.g., survivor, the immediate family of someone diagnosed with retinoblastoma, etc.);
• Include a large diverse group of people affected by retinoblastoma in research; and
• Promote research that is created and led by people affected by retinoblastoma.

Primarily, we work to promote the Canadian Retinoblastoma Research Registry, a list of members in the retinoblastoma community, to increase reach of our research engagement opportunities and to ensure patient partners are representative of those affected by retinoblastoma.  

We have also created a network of retinoblastoma patients who act as champions of retinoblastoma research and patient engagement. Our goal is to have a champion leader in each province who collaborates with their local communities to promote retinoblastoma research and CRRAB initiatives.

In addition, the PEWG hosts Retinoblastoma Awareness Tables in the eye clinic at SickKids to introduce patients and parents to CRRAB initiatives, and the Canadian Retinoblastoma Research Registry. Our goal is to host these awareness tables in retinoblastoma clinics across Canada.

To learn more about the PEWG and to share in our passion for research created and led by retinoblastoma patients and join our working group, please email us at retinoblastoma.research@sickkids.ca.

2. Research Advisory Working Group

The Research Advisory Working Group was developed to answer the question: “How do we facilitate ethical and equitable interactions between researchers and patients?”

In this working group, participants review requests from research teams who wish to recruit participants for relevant retinoblastoma studies through the Canadian Retinoblastoma Research Registry. The request is vetted by the Research Advisory Working Group and a lay summary of the request to participate is emailed to the registry participants who have expressed interest in being contacted for research opportunities.  

This working group creates this very quarterly newsletter and corresponding blog (www.rbcanadaresearch.com) that includes articles co-written by researchers and patients about new research, retinoblastoma conferences, or experiences with patient engagement in research projects. The group is currently updating the website to better highlight the great work CRRAB is doing – stay tuned for the big reveal!

3. Research development working group

This working group evolved from a previous working group focused determining the Top 10 Retinoblastoma Research Priorities in Canada. Their goal is to design a research proposal based on one of the Top 10 priorities. The Research Development Working Group members are working towards solving Priority 3:

How to provide culturally competent social, emotional and psychosocial support to retinoblastoma patients, survivors, parents and families (at diagnosis
and beyond)

The members created the study protocol and have applied to grant competitions that are currently under review. See our previous post about this project here.

Upcoming: Calgary RB Family Day

Author: Leslie Low, retinoblastoma parent

Families in Western Canada are invited to attend a Retinoblastoma Family Day. Event will be held on October 5, 2019 from 10am-4pm. This is a great opportunity to connect with other retinoblastoma families!

Morgan Livingstone (child life specialist) is flying out from Toronto to run a child life program – this is a great opportunity to help kids learn to be more comfortable with their condition and procedures. While the Child Life program is running, we will have a robust education session for the adults. Several retinoblastoma experts have agreed to come and share their wisdom including Dr Gallie (ophthalmologist), Dr Ronald Anderson (oncologist), and Shirley Weyland (occularist). We will be discussing important topics such as second cancers, pathway of care for treatment (especially when the trips to Toronto become less frequent), and how we as patients can help drive the research forward and provide a better future for retinoblastoma. Any person who has been impacted by retinoblastoma is welcome to attend!

Click here to register

Canadian Retinoblastoma Research Advisory Board

The Canadian Retinoblastoma Research Advisory Board (CRRAB) was created December 2016 and general membership includes people affected by retinoblastoma (e.g., survivors, the immediate family of someone diagnosed with retinoblastoma etc.), clinicians, allied healthcare providers, researchers, patient engagement experts and policymakers.

The main activities of CRRAB are:

• Establishing the Top 10 Retinoblastoma Research Priorities
• The Retinoblastoma Champion Program
• The Retinoblastoma Research Registry

Establishing the Top 10 Retinoblastoma Research Priorities

From October to December 2017, we conducted a project to identify the top 10 retinoblastoma research priorities collaboratively with Canadian patients, clinicians, and researchers.

Please click on the link below to be directed to the Top 10 Priorities section of our site for the complete list of priorities and additional supportive materials.

Top 10 Priorities

The Retinoblastoma Champion Program

Our aim is to have a diverse group of individuals with lived retinoblastoma experience to act as our volunteer ambassadors of CRRAB initiatives. Drawing from personal experiences, Champions promote patient engagement in research among patients, healthcare professionals, and researchers. Visit the Champion Program section of our website to learn more about the program and meet our Champions.

Champion Program

The Retinoblastoma Research Registry

Currently there is a gap in moving research from the lab to bedside and many important voices are missing from the conversation. We want to change retinoblastoma research so that it is relevant to our patients and their family and, ultimately, to improve care. If you are a Canadian retinoblastoma survivor or if you are a caregiver of a retinoblastoma patient, sign up to our registry by clicking on the “Join the Canadian Retinoblastoma Research Registry” button to the right of the page.

Progress Update from the Research Development Working Group

Author: Ivana Ristevski

Priority 3:
“How to provide culturally competent social, emotional and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?”

The Research Development Working group has chosen Priority 3 from our list of Top 10 Retinoblastoma Research Priorities to actualize through the development of a research project aimed at solving it. We currently do not know how best to address the psychosocial needs of families affected by retinoblastoma. Individual needs of patients, siblings and parents may vary, and depend on the nature of the retinoblastoma diagnosis (e.g. unilateral vs. bilateral, type of treatments received).

To tackle this problem, we are adapting a questionnaire that will be used in a research study of parents and patients to evaluate their psychosocial needs. This has been a very exciting process because we have several different experts in the group and they are have been applying their knowledge to make sure the questionnaire is valuable, useful, and informative. The researchers have been evaluating and discussing different types of validated questionnaires to select one that is best suited to address our priority. The parents and survivors have been reviewing the questionnaires and thinking how the questions might be understood by other retinoblastoma patients and families and considering if all “emotional and psychological” topics pertaining to retinoblastoma are being addressed. We also have several health professionals who have drawn from their experience to build a plan on how the questionnaire will be executed and how we will create a plan for recruitment.

At this point, we are working on creating our research protocol and I am proud to say that all team members are contributing to this process. For myself and a couple other participants, this will be our first attempt at writing a protocol. This seems like a daunting experience but the motivation we have to tackle this priority, our experience with retinoblastoma, and the support provided by the more seasoned members, I am confident that this will be a successful experience.

As we are moving forward in our project, we see an opportunity in our team to involve a psychologist to help us better understand the psychological implications in a family dealing with childhood cancer and to help us understand how we can connect with our younger patients and better understand their needs. If you know of a psychologist who has a research interest in the psychology of families dealing with childhood cancer and is keen to join our working group, please email us at retinoblastoma.research@sickkids.ca.

Progress Update from the Research Development Working Group

Author: Ivana Ristevski

Priority 3:
“How to provide culturally competent social, emotional and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?”

The Research Development Working group has chosen Priority 3 from our list of Top 10 Retinoblastoma Research Priorities to actualize through the development of a research project aimed at solving it. We currently do not know how best to address the psychosocial needs of families affected by retinoblastoma. Individual needs of patients, siblings and parents may vary, and depend on the nature of the retinoblastoma diagnosis (e.g. unilateral vs. bilateral, type of treatments received).

To tackle this problem, we are adapting a questionnaire that will be used in a research study of parents and patients to evaluate their psychosocial needs. This has been a very exciting process because we have several different experts in the group and they are have been applying their knowledge to make sure the questionnaire is valuable, useful, and informative. The researchers have been evaluating and discussing different types of validated questionnaires to select one that is best suited to address our priority. The parents and survivors have been reviewing the questionnaires and thinking how the questions might be understood by other retinoblastoma patients and families and considering if all “emotional and psychological” topics pertaining to retinoblastoma are being addressed. We also have several health professionals who have drawn from their experience to build a plan on how the questionnaire will be executed and how we will create a plan for recruitment.

At this point, we are working on creating our research protocol and I am proud to say that all team members are contributing to this process. For myself and a couple other participants, this will be our first attempt at writing a protocol. This seems like a daunting experience but the motivation we have to tackle this priority, our experience with retinoblastoma, and the support provided by the more seasoned members, I am confident that this will be a successful experience.

As we are moving forward in our project, we see an opportunity in our team to involve a psychologist to help us better understand the psychological implications in a family dealing with childhood cancer and to help us understand how we can connect with our younger patients and better understand their needs. If you know of a psychologist who has a research interest in the psychology of families dealing with childhood cancer and is keen to join our working group, please email us at retinoblastoma.research@sickkids.ca.