Blog

Why Should I Participate in Research?

Author: Ivana Ristevski

If you have seen any of our social media posts asking you to participate in research you might be wondering “why do they want to hear from me?”. That is a really good question! Before I participated in my first research project, determining the Top 10 Retinoblastoma Research Priorities, I thought that the researchers and clinicians were the experts and I didn’t have anything more to offer. However, during the in person workshop where we were ranking the priorities, we were discussing which priorities were important and I saw that all the groups shared their thoughts and in turn listened attentively to the others as we discussed which priorities are important to us and why.

One of the examples from this experience where the voice of survivors made an impact to research was when a few survivors passionately persuaded the group that research on vision loss is very important to survivors and should be studied. They made sure this priority made it on the list.

If it wasn’t for the passion of parents and survivors sharing our stories and persuading the researchers and clinicians that the priorities we were passionate about need to be in the Top 10, the list would have looked a little different, not because researchers and clinicians do not find our priorities important but because they don’t have the lived experience and are sometimes not aware of the problems we faced and continue to face which we would like addressed by research. By including our voices we were able to enrich this experience and collaborate together and decide on a list of Top 10 that are important to all who are impacted by retinoblastoma, personally and professionally.

This was just one example of the impact of having your voice heard in research. I have encountered similar instances in other projects I have been involved in where the voices of parents and survivors help shape aspects of the research process to make it better. Below is an image of the research process and the steps required to execute a research study.

Your input, guided by your lived experience and personal skills, can help guide retinoblastoma research in any step of the research process but it can also enrich your life in the following ways:

If you are interested in getting involved, I invite you to sign up to the Retinoblastoma Research Registry where you will receive a quarterly newsletter letting you know about news and event and inform you of research opportunities. You can click the Join the RB Registry button on the ribbon at the top of this web page or click here.

One Retinoblastoma World Registration is Open

One Retinoblastoma World (1RBW) is a conference that gathers together eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue best possible care for all affected children and survivors. 

This year the conference will be held virtually and occurs as two part-days on October 3 & 4, 2020.

Conference programming will cover a wide variety of retinoblastoma topics suggested by the retinoblastoma community. The conference will include a combination of presentations, panel discussions, and networking sessions. 

Each day of the conference will also feature a virtual child life activity, specifically developed for children with lived experience of retinoblastoma and designed to promote effective coping through play, education, and creative self-expression. 

Conference registration is now open!

Make sure to register before September 1, 2020 to receive a physical conference delegate package in the mail!

A Brief History of the One Retinoblastoma World Conference

Author: Kaitlyn Flegg

The One Retinoblastoma World Conference hosts eye and cancer specialists, researchers, parents and survivors from around the world to pursue the best possible care for all affected by retinoblastoma. Collaborative research, clinical care, and family support benefitting the majority of children and survivors can only be developed through these inclusive meetings with a real-world focus. 

Since 2012, this conference has continued to encourage collaboration and networking while focusing on understanding the needs of the patient and family. 

Previous in-person One Retinoblastoma World conferences have been coordinated in the same location as, and directly prior to, the World Congress of the International Society of Paediatric Oncology (SIOP). The SIOP Congress is the world’s largest annual paediatric oncology meeting, gathering thousands of medical professionals and parent/survivor advocates from every corner of the globe to share and build knowledge for children with cancer.  

One Retinoblastoma World meetings are hosted by institutions and organizations local to the country holding the SIOP meeting. The meetings often include a family day and a Child Life Programming. A tiered registration fee structure is offered with lower fees for survivors, families and those from low- and middle-income countries to enable inclusive participation and collaboration. 

Four One Retinoblastoma World Conferences have occurred to date: 

October 2-3, 2012: London, England, hosted by World Eye Cancer Hope UK

October 26-28, 2014: Toronto, Canada hosted by The Hospital for Sick Children, Retinoblastoma Program

October 17-18, 2015: Dublin, Ireland, hosted by the Retinoblastoma Programs of Ireland and The Hospital for Sick Children

A detailed summary of the 2016 One Retinoblastoma World Meeting is available here and here. 

October 9-11, 2017: Washington D.C., USA hosted by World Eye Cancer Hope USA 

A summary report from the 2017 One Retinoblastoma World Meeting is available here. Additional content, including videos of the panel sessions, is available here. 

Patient Story: Taline Dorna

Author: Ivana Ristevski

Taline Dorna has been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017 and along with her family she has participated in many different CRRAB activities. As a teacher, mom of 3, wife, and an aspiring author, Taline works around her schedule to participate in CRRAB activities in order to learn more about retinoblastoma, meet other families, keep up to date on research and to make a difference.

Taline’s journey started when her son was diagnosed with unilateral retinoblastoma at 5 months old.

For a couple of months, my husband and I had noticed that our son had an odd glow in his left eye. We mostly saw this glow when we took a picture of our son using the flash on our phone cameras. We dismissed it thinking it was likely the flash or bad lighting. After some time, we noticed the glow under dim lighting, depending on the angle the light was hitting his eye. This became concerning, and so we decided to take him to our pediatrician for a checkup. Our pediatrician had never seen anything like this before and was perplexed herself.

They saw an ophthalmologist and were immediately sent to SickKids where they received the diagnosis and treatment.

---

Taline and her family started participating in CRRAB by attended their first symposium in 2018 where they participated in discussions to shape research projects and created dissemination materials to raise awareness of the Top 10 Retinoblastoma Research Priorities. The kids attended the Child Life program where they enjoyed doing medical play.
In 2020 Taline attended her second Retinoblastoma Research Symposium and participated in a research workshop to provide input on the design of the stickers to be used on the Retinoblastoma Journey Map, a project which will be tested for its use in providing a pathway of care for families of a child newly diagnosed with retinoblastoma.

As an educator, I was able to contribute my expertise and skills and apply it to something that will be an instrumental piece in the lives of other RB patients and survivors.

Participating in research can take many different forms and CRRAB helps to facilitate this by offering different ways to be involved such as:

• hosting the annual Retinoblastoma Research Symposium
• sharing opportunities to participate in research through the Retinoblastoma Research Registry by bringing forth vetted research studies
• offering platforms for engagement which include the monthly Regional Working Group calls and project specific patient partnerships

By being involved with CRRAB, I feel I’m able to gain a better understanding of the cancer my son had and what I can do to apply my skills to help raise awareness.”

“I’m currently in the midst of publishing my first children’s book that talks about a boy with RB that loses his ordinary eye and get’s an extraordinary eye! I wanted to do something to honour my sons name and help other children with RB feel good about themselves while raising awareness.

If you are interested in staying up to date on retinoblastoma research and events, sign up to the Retinoblastoma Research Registry.
If you are interested in participating in any of the CRRAB activities, send us an email at: retinoblastoma.research@sickkids.ca

Researcher Story: Why I’m Involved in CRRAB

Author: Dr. Sandra Staffieri, BAppSc(orth), PhD

I am an orthoptist by training, so my expertise lies in vision and eye problems, particularly in children. I have worked in the eye department at the largest paediatric hospital in Melbourne, the Royal Children’s Hospital, for 35 years. 26 years ago, I was asked to help coordinate the care of children diagnosed with retinoblastoma. Little did I know this would become a lifelong passion of mine.  As a Retinoblastoma Care Coordinator I have the privilege to walk alongside newly diagnosed families from diagnosis, through treatment to maintenance – and watch the children grow up and do amazing things – just like anybody else. I have been doing this for so long, I am now looking after the next generation – and that has been rather special.

All aspects of retinoblastoma are important. Genetic testing, the impact diagnosis and treatment has on emotional well-being on the whole family unit, survivorship, surveillance, and screening. That said, I have a particular interest in delayed diagnosis of retinoblastoma and raising awareness of the early signs of the disease. This brought me to completing my PhD in this area.

My research involved developing and evaluating an information pamphlet for parents to recognize the early signs of retinoblastoma – turned eyes (strabismus) and white pupils (leukocoria). Because of my background in children’s eye problems, I acknowledged that strabismus and leukocoria can mean lots of different problems – not just retinoblastoma. Armed with this understanding, I successfully advocated to our health department to include this information for parents as it was more than just the small number of children with retinoblastoma I was looking to diagnose early; it was all children with any eye problem that presented in the same way. Other diseases that present with these signs are often not as serious as retinoblastoma, but like retinoblastoma, early diagnosis means early treatment and better outcome.

I have been a member of the Canadian Retinoblastoma Research Advisory Board (CRRAB) since 2017, but have known many of the Canadian retinoblastoma specialists for almost a decade.

I am very excited to be a member of the Research Development Working Group – Research Priority #1 “How to increase early diagnosis of retinoblastoma”. Due to my background in research, developing health information, childhood eye problems, and retinoblastoma; I am the research lead for a specific project that we hope will lead to earlier diagnosis. Together with other researchers, parents, and survivors interested in this topic we are trying to understand the process parents go through to achieve a retinoblastoma diagnosis in their child. When we identify the “barriers” (what caused delay) and the “enablers” (what worked well) for parents whose children have been diagnosed with retinoblastoma, only then can we see what worked and what didn’t – and then we can develop an action plan for improvement.

I look forward to completing this study and making a difference, where a difference can be made.

Developing a Patient-Reported Outcome Measure for Retinoblastoma

Author: Ana Janic, MSc

In 2018, I was welcomed onto a diverse, interdisciplinary team of dedicated retinoblastoma researchers. At that time, I was just starting my graduate studies and, I must admit, knew little about retinoblastoma and even less about patient engagement. However, my supervisor, Dr. Helen Dimaras, quickly offered extensive insight into the retinoblastoma universe. Almost overnight I found myself immersed in a huge community of retinoblastoma researchers, healthcare professionals, and patients who strongly engage in research.

Over the past two years, Dr. Dimaras and I worked together on an incredible project that is rooted in patient advocacy and encourages patient-focused evaluation of disease. Patient-reported outcome measures (PROMs) are questionnaires, completed by patients, that provide subjective information on various health concepts, like a patient’s quality of life, evaluation of symptoms, and physical, mental, or social well-being. Within a PROM, questions are grouped into categories, referred to as domains, which reflect aspects of the chosen health concept(s). PROMs are developed in multiple phases, with robust patient involvement, and take years to complete; my project represents the initial steps in the development of a PROM to measure retinoblastoma treatment outcomes.

The primary goal of my project was to uncover which treatment outcomes are important and relevant to retinoblastoma survivors and parents of survivors. To do this, I held focus groups with adult survivors and parents of survivors. Further, we decided to interview pediatric survivors between the ages of 6 and 17 years old. Figuring that survivors in this age range could complete a retinoblastoma-specific PROM by themselves, we felt it imperative to identify the valued treatment outcomes in this demographic in order to develop a comprehensive and relevant questionnaire.

Focus group discussions with pediatric participants was a new method for us, therefore, we consulted several scientific resources to ensure our methods were sound. One of our greatest feats was developing an easy-to-understand interview guide for child survivors. 

First, we started by mirroring the interview guide used in adult groups. The pediatric interview guide included the same question categories as the adult interview guide, however, question language was modified to adjust for comprehension. For instance, when discussing psychological and emotional outcomes, adult survivors and parents of survivors were asked:

“Does a good emotional state indicate successful treatment? What is a good emotional state?”

The question was modified for pediatric survivors to read:

“Some things make us happy, and other things make us uncomfortable and sad. Do you think that retinoblastoma, or retinoblastoma treatment, can make you happy or sad?”

After question modification, two pediatric interview guides emerged: one for child survivors aged 6 to 9, and another for adolescent survivors aged 10 to 17.

Still, even after the question language was modified, we recognized that some questions might be intimidating for survivors in the 6 to 9 age group to answer, possibly making them too shy or uncomfortable to answer. This forced us to get creative and think outside the box. After a lot of reading and brainstorming, we decided to incorporate role-play into the interview guide. Children were asked to play the role of a doctor treating a fictional retinoblastoma patient; in our case, Elli the Elephant. Elli, widely used as a retinoblastoma comfort toy, is a stuffed animal with one removable eye, developed by the German retinoblastoma patient advocacy group Kinder Augen Krebs Stiftung (KAKS, https://www.kinderaugenkrebsstiftung.de/en/homepage/elli/). Questions were modified to reference Elli and her treatment, in hopes to elicit the children’s own ideas and perspectives surrounding treatment outcomes. For example, when discussing the concept of independence and daily functioning, child survivors were asked:

“Elli is quite independent. She likes to read books, ride bicycles, and draw pictures, all on her own! What type of things do you like doing by yourself? Are there any activities you wish you could do on your own that you can’t yet? Is it important that you are able to do things on your own?”

With these modifications (and a box of 20 Timbits as a thank you to each participant), we successfully included young survivors in our research. This additional perspective led to incredibly meaningful findings which were not elicited through conversations with adults. I personally found the pediatric interviews very moving and engaging. In addition to being insightful beyond their years, the pediatric participants were wildly funny and smart. Every child and adolescent interviewed provided a rich description of their experiences living with and managing retinoblastoma. Survivors also clearly explained their personal understanding of what successful treatment means and identified important outcomes to include in a questionnaire.  Further, younger survivors gave a detailed account of how they would treat Elli; not only medically, to cure the tumor, but providing comfort throughout the process to help ease her nerves.

I would, however, be remiss not to acknowledge the research contribution of the adult survivors and parents of survivors. Their participation in the focus groups was extremely important in understanding the effects of retinoblastoma treatment over the course of time. It is their engagement and participation in research that drives retinoblastoma research in Canada and contributes to the success of the Canadian Retinoblastoma Research Advisory Board.

Having wrapped up the study now, I can say it was quite a success. We used the information gleaned from participants to identify potential health concepts and possible domains to assess in a future PROM. We are currently in the process of submitting this research for peer-review and publication, after which we will be able to confidently share the results with the broader public. Stay tuned for the release of our results and publication updates!

Conducting this research has taught me more than I can put into one blog post. There are many people who contributed to this work and I am beyond grateful for each and every one of them. However, this research ultimately could not have happened without the generosity and patience of the participants. To all the parents who spent their weekends with me, sharing difficult personal and family experiences; to all the survivors that participated, little and big, I have been profoundly moved by, and am deeply grateful for your kindness in sharing a piece of your life with me and allowing me the opportunity to learn about your world. You made this project real, thank you.

CRRAB and CRBS: How They Operate Uniquely to Serve…

By Ivana Ristevski and Genevieve Savoie

We are both personally touched by retinoblastoma and from our experiences we have found our spot in the retinoblastoma community where we want to make a difference. Together, we would like to re-introduce you to the Canadian Retinoblastoma Society (CRBS) and highlight its relationship with the Canadian Retinoblastoma Research Advisory Board (CRRAB). A passion for making a difference allows these organizations to work together so that we can positively impact all Canadians affected by retinoblastoma.
The chart below outlines the main attributes of each organization:

In 2019 and 2020, we collaborated to bring you the Retinoblastoma Family Gathering, which was part of the annual Retinoblastoma Research Symposium. Currently, we are working together to help organize the 2020 One Retinoblastoma World Conference which will be hosted virtually! See the blog post about information on the meeting here.
Our organizations’ unique qualities and strengths will be used support each other and work collaboratively. We will continue to work together by:

• Sharing ideas and opportunities with each other and with our members and social media platforms
• Participating in each other’s activities
• CRRAB will promote CRBS activities and provide research support and materials
• CRBS will promote CRRAB research initiatives to its members and provide patient connections

We are excited to keep working together and engaging the retinoblastoma community! Visit our respective websites for more information and let us know how you would like to be involved!

______	To join CRBS or for more information on the programs and supports available, please contact us:	For more information about CRRAB and activities, as well as the link to the RB Registry where you can sign up to receive opportunities to participate in research and receive research news, please contact us:
	www.rbsociety.ca	www.rbcanadaresearch.com
	cdnrbsociety@gmail.com	retinoblastoma.research@sickkids.ca

Opportunities to be Involved

Please see below a list of current opportunities to get involved with the Canadian Retinoblastoma Research Advisory Board. These opportunities are available to survivors, parents/guardians, siblings, healthcare professionals and researchers.

Social Media Team

Join our existing group of volunteers and help us develop new content for our social media platforms!

French Speaking Membership

Throughout 2020 the Canadian Retinoblastoma Research Advisory Board aims to better engage with the French-speaking community. Please help us recruit these individuals by translating current CRRAB content and creating new material in French

Regional Working Groups

The CRRAB regional working groups aim to engage with the broader retinoblastoma community in order to recruit patients for registry as well as health professionals, researchers and patients for CRRAB.

• West Coast Working Group meet on the 2nd Saturday of each month at 12:00 PM EDT 
• Central/East Coast Working Group meet on the 2nd Wednesday of each month at 12:00 PM EDT 

For further information on these opportunities please email retinoblastoma.research@sickkids.ca.

Feedback Requested

Feedback is requested from the general CRRAB membership on a future event, the One Retinoblastoma World Conference; and a current project, the Retinoblastoma Journey Maps. Please take some time to read about these endeavours and answer short surveys.

One Retinoblastoma World 2020 Conference

The One Retinoblastoma World Conference is held every two years and gathers eye and cancer specialists, researchers, parents and survivors from around the world  to pursue the best possible care for all children affected by retinoblastoma. Collaborative research, clinical care and family support benefitting the majority of children can only be developed through these inclusive meetings with a real-world focus. This conference is regularly scheduled ahead of the International Society of Paediatric Oncology (SIOP) congress which this year is being held in October in Ottawa, Canada. However, due to the uncertainty created by the COVID-19 pandemic the conference host, International Retinoblastoma Consortium and associated organizations World Eye Cancer Hope and local conference co-hosts, the Canadian Retinoblastoma Research Advisory Board, the International Retinoblastoma Consortium and the Canadian Retinoblastoma Society, have decided to hold the One Retinoblastoma World 2020 Conference virtually. This novel structure will allow for global collaboration and networking while prioritizing attendee health and safety. The virtual conference will consist of the same components as an in-person meeting (i.e., presentations, panel discussions and workshops), all hosted online. At this time we are requesting feedback from our community on potential dates and agenda items. Please click the link below to complete a quick survey to provide your response. Your feedback is greatly appreciated! 

https://forms.gle/7GYDbUtAQ6uZgZmaA

---

Retinoblastoma Journey Maps

In order to address the Retinoblastoma Research Priority #9, a prototype of a patient-centered pathway of care has been developed which we call the Retinoblastoma Journey Map. Please refer to the newsletter article “2020 Retinoblastoma Research Symposium – Priority #9 Research Workshop – Creating a Prototype of the Retinoblastoma Journey Map” for more information.  

We are looking for your feedback on different aspects of the RB Journey Map. Please provide your feedback by clicking the link below where you will be directed to a questionnaire to complete. The questionnaire should take about 30 minutes. 

https://forms.gle/Hsak95Ha9kVDDEN6A

Family Story: Attending the Retinoblastoma Research Symposium

Author: Tricha Worobec

In January 2020 we had the honour of attending the Retinoblastoma Research Symposium in Toronto. This brought our family many learning opportunities, but most importantly provided us all with a deep sense of empowerment. 

The Canadian Retinoblastoma Research Board focuses on Patient Oriented Research. This allows patients to drive the priorities and outcomes for research. We gained knowledge of the fundamentals of Patient Oriented Research. Personally, since my expertise comes from being a parent of an RB survivor, the practice of speaking in a large auditorium with specialized doctors, researchers, ocularists, child life specialists, and geneticists would normally be intimidating. However, in this scenario, the focus is on inclusivity, co-learning, and mutual respect, so everyone who spoke, including myself, were equally valued; the entire experience was empowering. It was obvious that the primary focus of Patient Oriented Research is authentic partnership between patients and professionals. 

My partner and I were able to develop connections with other individuals affected with RB. While socializing with RB survivors from different age categories, they provided their own expertise from personal lived experiences that gave us insight to which we would have never known. We learned new techniques to help with the care of our son’s prosthetics as well as tricks to support him with depth perception and learning in school.  

In attendance with us at the symposium was our two children, our youngest Konnor who is our five-year-old RB survivor and our eldest Roman who is nine years old. Both of our children had the most incredible time learning, playing and engaging with the child life specialists and the amazing volunteers. Roman told us that he felt equally included in learning about RB and how people were equally interested in him as they were his RB survivor brother. Konnor was moved to tears when the event had come to an end, stating he didn’t want to leave the people who were just like him, who also had a “magic eye”. I was shocked to learn that Konnor had these big feelings of being different and made deep bonds with people who he said, “are just like me.”  It was not just resources that we gained at the symposium. We left with being empowered, connected, and most importantly with 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.