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.
If you’re on twitter, please feel free to check out presentations from our international colleagues with @isgedr or #ISGEDR2019.
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.
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.
This cartoon of something called a “contrast sensitivity functions” shows how well we are able to see things that are big and dark compared to faint and tiny. People with one eye were better able to see the faint things compared to people with two eyes.
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 .
Another interesting finding that Krista and Jennifer noted was that some of the hearing (auditory) parts of the brain also appeared to be bigger than those in the brains of people with two eyes. These bright blue spots painted on this inflated brain show auditory regions of the brain that are thicker in people with one eye compared to people with two eyes. (from Kelly et al., Neuroimage Clinical 2014, available here)
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!
“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:
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.
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!
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.
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!
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:
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.
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
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.
On Tuesday April 30, 2019, CRRAB was represented at the annual Association for Research in Vision and Ophthalmology (ARVO) conference in a Special Interest Group Session on “Patient Engagement in Ophthalmology Research.”
Retinoblastoma Research Champion, Leslie Low, gave a personal account of her involvement in retinoblastoma research in Canada. Her talk highlighted the impact that the patient community can have when there is opportunity to engage in research as a genuine partner. Dr. Helen Dimaras gave an overview of CRRAB activities since its inception in 2016, covering the goals and accomplishments of its individual working groups.
National and international panelists included:
Dr. Andi Skilton, a Patient and Public Involvement and Engagement Senior Research Associate Lead from the NIHR Moorfields Biomedical Research Centre (London, UK);
Dr. Larry Mroz, a Research Navigator and Patient Engagement Co-ordinator from the British Columbia Strategy for Patient Oriented Research (SPOR) Support Unit, (Vancouver, Canada); and
Dr. Alastair K. Denniston, Consultant Ophthalmologist and Professor, University of Birmingham (Birmingham, UK).
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.
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.
On January 26 & 27, 2019, the Retinoblastoma Research Symposium in Toronto proved to be a resounding success!
Patients and survivors, family members, researchers, and clinicians came together to learn from each other, connect with their peers, and discuss the future of retinoblastoma research and advocacy.
We’d like to thank everyone who attended the symposium this year, and we look forward to having another record-breaking turn out next year onJanuary 25 & 26, 2020!
If you’re interested in attending the 2020 Symposium, here is an example of what the weekend might have in store for you:
