A Survivor and Parent perspective on Retinoblastoma Awareness

Author: Alena Vincent

Retinoblastoma has been in my family for 3 generations, passed from my mother to me and from me to my daughter, but with each new generation there has been a different journey for each of us. My mom, Kathy, was diagnosed in the 1950s. When my grandmother discovered my mom was having difficulty seeing as a toddler, she brought her to a specialist where she found out the cause, bilateral retinoblastoma. My grandparents had to make the difficult decision: risk radiation and scarring to my mother’s face with little chance of it successfully curing her cancer, or remove her eyes to save her life. They decided on the latter. My mom found out in her 20s that her form of retinoblastoma was likely hereditary, so she chose to get as much information as she could, and this is how she found Doctor Brenda Gallie in the 1980s.

Although my older brother was unaffected (DNA would later prove he was never a carrier), my first tumours were discovered at 4 months old. I was one of the first retinoblastoma patients in Canada to receive laser therapy under Doctor Gallie’s care, and this combined with cryotherapy saved my eyes and my vision. To this day, I still have 20/20 vision in both eyes.

When my husband and I chose to start our own family, we wanted to be as prepared as possible, so we opted for the chorionic villus sampling (CVS) prenatal DNA test. Our first child, Kyler, wasn’t a carrier, however, our second child, Violet, was considered “affected”. We were referred to a wonderful ophthalmologist in Edmonton, Doctor Solarte, who recommended I be induced at 36 weeks and told me that we would likely have to go to Toronto to have Doctor Gallie and Doctor Solomon treat Violet. On October 24th, 2017, Violet was born and at a day old her first tumour was discovered. She has had a total of 5 tumours, 4 in her right eye and 1 in her left eye, all successfully imaged and treated with an Optical Coherence Tomography (OCT) scanner and laser therapy respectively. One of Violet’s tumours was only 0.4 of a millimeter. It was one of the smallest retinoblastoma tumours to ever be successfully laser treated. She is now 3 years cancer free, has 20/25 vision in both eyes, and is an independent and adventurous 5-year-old.

I joined CRRAB in the fall of 2018. I was excited to be part of further improvements for care and to share my experiences as a survivor and as a parent of a child actively in treatment. I have participated in many activities since I joined including; attending zoom calls to share insights, speaking at and attending a RB Family Gathering in Calgary, virtually attending the RB Symposium in 2021 during the COVID-19 pandemic, and leading a discussion at a Cup of Tea meeting about an article examining OCT scanners.

We just passed World Retinoblastoma Week this past May 14 – 20. It’s fitting that the last day fell on what would have been my mom’s 71st birthday. Unfortunately, she passed away from cancer in 2012. She would have loved to see a world that catches retinoblastoma early and faces the RB1 gene with more knowledge and preventative care. Every pediatrician and general practitioner should be more aware of retinoblastoma. The lack of knowledge here has caused many children to go undiagnosed for critical weeks even when caregivers are fighting for answers. This shouldn’t be the case. In recent years, we’ve seen amazing advancements in genetic research, and doctors are starting to take genetic predispositions seriously. When RB1 survivors and their doctors understand their increased risk, it can help catch secondary cancers early, and allow survivors to live long healthy lives.

CRRAB is part of the movement forwards. It not only works to support children and families actively going through care, but also to educate for awareness and advocate for long term care for patients who have suffered vision loss, have prosthetic eyes, or are at risk for secondary cancers due to the RB1 gene. Their continued push to use public platforms and events to share information and create a community helps survivors and parents feel less alone, and it is this knowledge that will help future generations. Knowledge is power, and its power is why both my daughter, and I can see today. Knowledge communities like CRRAB will help support RB patients and survivors for the rest of our lives.

2023 Retinoblastoma Research Symposium

The 2023 Retinoblastoma Research Symposium was once again a success!  In our first hybrid symposium on January 28 – 29, 2023 we gathered the community both in-person and virtually  to grow together and advance patient-oriented retinoblastoma (RB) research in Canada. The symposium gathered many stakeholder groups including RB patients, survivors, parents, other family members, researchers, and health professionals to connect with each other, learn about CRRAB, and discuss the future of RB research.

Keynote Presentations 

Terry Kelly

To kick off the first day of the symposium Terry Kelly gave a riveting keynote presentation. As an RB survivor, Terry spoke of his experience with RB and blindness, through the combination of storytelling and music. Terry shared the numerous challenges he faced from childhood through to his adult life and explained how he relied on his loved ones and learned to adapt in order to find solutions. For example, Terry and the rest of his classmates at the Halifax School for the Blind, had the opportunity to play hockey by altering their equipment to add buzzers to their nets or using a can can filled with marbles as a puck. In sharing his life experiences, Terry motivated us to look at our lives with a new perspective. Through his song Celebrate Life Terry sang about being not only a cancer survivor but also being a survivor that thrives throughout their life.

Dr. Francine Buchanan, MLIS, PhD

The second day of the symposium began with a keynote presentation by Francine Buchanan. Francine works at SickKids as the Research Patient & Family Engagement Coordinator, to ensure that patients and families have the opportunities to partner with researchers in pediatric research.  She shared how her initial motivation behind her work started when her son, who faces several medical complications, was born. During her presentation, Francine discussed some of the common barriers to patient engagement in research and expounded on the various complexities of incorporating patient engagement into a project. However, despite these perceived difficulties, Francine highlighted the importance of patient engagement in research and how including the patient voice provides added depth through their valuable expert insight gained through their personal experiences.

CRRAB Annual General Meeting

The Seventh Annual CRRAB General Meeting provided a forum to review the goals and accomplishments of previous years, reflect on the lessons learned from the past, and to develop a plan for 2023. During the meeting, existing CRRAB members came together with the broader RB community to learn more about CRRAB and set goals for 2023.

The goals of CRRAB are designed to be aligned with the three main aims of the Canadian Patient Engagement Strategy. Each year, goals are set to help move the aims forward. In 2023, CRRAB decided to focus on one main goal per aim, as follows:

Strategy Aim 1: Include a large and diverse group in retinoblastoma research.

2023 Goal: Collate metrics about size and composition of the Retinoblastoma Research Community, and share, in a simple and user-friendly format, with CRRAB members in each quarter of 2023.

How does this goal help support Strategy Aim 1? By knowing details about who is already enrolled in the Retinoblastoma Research Community, we also learn who is missing. Knowing who is missing will inspire new strategies to assist in reaching the under-represented.

Strategy Aim 2: Share research results.

2023 Goal: Identify and train four pairs of patient- and non-patient partners to lead a “Cup of Tea” event producing a plain language summary, video recording and podcast, each covering a RB research article, in March, June, September and December of 2023.

How does this goal help support Strategy Aim 2? The “Cup of Tea” has proven successful in gathering a large group to discuss important RB research in a way that makes it accessible to non-researchers. By continuing this program, we share more research results, and as it grows, it will reach a larger audience.

Strategy Aim 3: Promote patient-partnered research.

2023 Goal: Raise awareness and facilitate participation of patients, researchers, and health professionals. CRRAB members in project-specific patient partnerships aimed at solving the Top 10 Retinoblastoma Research Priorities, by end of 2023.

How does this goal help support Strategy Aim 3? By raising awareness about and linking CRRAB members to research teams aiming to solve the Top 10 Retinoblastoma Research Priorities, the resultant research will incorporate lived experience and lead to higher quality results.

Multidisciplinary Panels: Discussing Top 10 Retinoblastoma Research Priorities

Priority 2

Speakers: Mary Connolly-Wilson, Dr. Stephanie Kletke, Dr. Trevor Pugh

Retinoblastoma Research Priority #2 asks, “What second cancer screening is optimal for heritable RB survivors?”. Approximately 45% of RB patients have the heritable form with those affected having a greater risk of second cancers later in life, as well as the risk of RB being passed on to their children.

The panel began with Trevor Pugh, cancer genomics researcher, who gave an overview of his project that uses circulating tumour DNA (ctDNA) from blood samples from patients with hereditary cancer syndromes to detect cancer. He ended his presentation with an example from a neurofibromatosis type 1 (NF1) patient for which their leukemia was detected earlier via the ctDNA monitoring compared to conventional surveillance by whole body MRI. The next speaker, Stephanie Kletke, pediatric ophthalmologist, explained the risk of second cancers for hereditary RB survivors and reiterated the need for non-invasive early second cancer detection. She then summarized her proposal for a clinical trial to determine the feasibility of cell-free DNA liquid biopsy to detect second cancers in heritable RB. To close out the panel, Mary Connolly-Wilson, genetic counsellor and family member to RB survivors, provided her personal and professional opinion on the topic. Mary shared her family’s experiences with second cancers and underlined the need for effective screening protocols for heritable RB survivors.

Priority 4

Speakers: Dr. Ella Bowles, Dr. Bruce Crooks, Dr. Ashwin Mallipatna, Marg Macfarlane

Retinoblastoma Research Priority #4 asks, “What is the optimal follow-up for heritable RB patients and survivors and how can we ensure this is provided to all?”. Heritable RB survivors have increased risks of recurrent RB in childhood and second cancers later in life, as well as the risk of passing the RB1 pathogenic variant to their children. These risks correspond to the need for standardized plans for adult follow-up of heritable RB survivors, which do not currently exist.

Bruce Crooks, pediatric oncologist, started the panel presentations by giving an overview of the concepts of long-term follow-up and survivorship. He underscored the idea that all aspects of a cancer survivor’s health and well-being from diagnosis to end-of-life should be included in survivorship and presented the trajectory of care from diagnosis to active treatment, to follow-up and surveillance, to long-term follow up. Next, Ashwin Mallipatna, pediatric ophthalmologist, presented follow-up in terms of care for the eye. He explained the various factors that play a part in deciding on eye follow-up including, age, laterality and genetics, treatment received, and other complications. The next presenter, Marg Mcfarlane, family member of RB survivors, provided her lived experience of RB, explaining the self-screening her affected family members were informed of and detailing the lack of protocol for follow-up in her family. Finally, Ella Bowles, RB survivor and scientist, presented by sharing her RB story and highlighted her struggles to access the appropriate follow-up care as an adult.

Priority 5

Speakers: Dr. Furqan Shaikh, Dr. Helen Dimaras, Dr. Brenda Gallie, Jillian Purdy

Retinoblastoma Research Priority #5 focuses on new treatments for RB, and in particular, prospective studies that have long-term follow-up. These prospective studies help us better develop new treatment methods for RB and allow us to determine their impact on patient outcomes.

The panel started with Furqan Shaikh, a pediatric oncologist, sharing the history, current standards, and future directions of RB treatments. Then, Helen Dimaras, scientist, and Brenda Gallie, ophthalmologist, shared updates of their current research studies. Helen presented the development of a new biobank at SickKids, with the purpose of providing other researchers the resources to conduct  research on RB and other pediatric eye cancers. In addition, Helen discussed the status of a North American multi-site study, looking at the long-term health outcomes of RB patients. Brenda followed by sharing some exciting results of her clinical trial that tests the “chemoplaque” a device that is glued directly to the eye to deliver sustained-release chemotherapy directly to the affected eye. Finally, Jillian Purdy, a parent of a child with RB, shared her family’s experience of her son participating  in Brenda’s chemoplaque clinical trial, and the importance of new treatments for RB from a parent’s perspective.

Ask the Experts

Speakers: Dr. Marie-Anne Brundler, Dr. Hallie Coltin, Beverley Griffiths, Terry Kelly, Matthew Milne, Alissa Ulster, Rose Venier

The ‘Ask the Experts’ panel consisted of a wide range of experts including a pathologist, oncologist, nurse, RB survivor, ocularist, social worker, and genetic counselor. The panelists answered questions from attendees on various topics such as, “What steps does pathology take from when the tumor is collected to when a patient receives the results?”, “What are the new technologies being used in making prosthetics?” and “How should family’s receive clinical information?”.  All the experts on this panel play an important role in supporting the patient and family. If you have any questions about your care or about RB, talk to your RB care team.

Research Workshops: Opportunities Across the Research Lifecycle Related to the Top 10 Retinoblastoma Research Priorities

Retinoblastoma Research Priority #1: Early Diagnosis

Facilitators: Dr. Ashwin Mallipatna, Ana Janic, Bronte Lim

Background:

Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma?”. We know that earlier diagnosis of RB leads to improved health outcomes and less intensive treatment.

Session Summary:

This year’s workshop on Priority #1 began with an overview of early detection of RB by Ashwin Mallipatna. He then introduced thetopic of red reflex exams (RRE), examinations of pupil reflections that can reveal problems in the eye which is particularly useful in young children, and its role in decreasing age at diagnosis for RB. We then heard from two families and their lived experiences with RB, providing important insight into the difficulties of obtaining an RB diagnosis in Canada. This  highlighted the need for improved RB awareness in both new parents and health professionals. 

Next, we heard from Ana Janic, medical student, discussing her project – an in-depth review of the literature on RRE. Ana’s goal is to determine the gold standard method for conducting a RRE, which will help promote RRE education amongst health professionals, thereby facilitating early RB detection. This education is vital, as improperly administered RREs can lead to false positives and false negatives, delaying RB diagnosis.

Lastly, the workshop participants brainstormed the creation of an informational pamphlet on RB and RRE, aimed at parents and health professionals. This pamphlet will not only raise RB awareness, but also empower self-advocacy in parents suspecting eye concerns in their children.  

Next Steps:

If you would like to contribute to the development of the pamphlet or participate in future priority #1 working group meetings and workshops, please email us: retinoblastoma.research@sickkids.ca. 

Retinoblastoma Research Priority #9: Pathway of Care

Facilitators: Ivana Ristevski

Background:

Retinoblastoma Research Priority #9 asks, “How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?”. Currently, there is no uniformity in how patients receive information about their care; therefore, having a pathway of care may help families adhere to treatments, alleviate distress, and improve patient outcomes.

Session Summary:

Since our last research workshop during the 2020 Retinoblastoma Research Symposium, the work on the project “Retinoblastoma Journey Map” has been ongoing. During this year’s research workshop, the results of the testing of the Retinoblastoma Journey Map were shared with the group. Project leads Ivana and Helen also provided an update on the status of the article which is being written about the project. The aim of the workshop was to use the article’s scientific abstract to draft a plain language summary. The participants read through the scientific abstract together and identified terms and ideas that they felt were necessary to include. Ivana then led a discussion on how to describe the terms and ideas in plain language and the group created a first draft of the plain language summary.

Next Steps:

The attendees of this workshop will be invited to review the completed draft. If you are interested to review the plain language summary, please contact us: retinoblastoma.research@sickkids.ca.

Celebrating Our Progress Towards Solving the Top 10 Retinoblastoma Research Priorities

It has been five years since the pan-Canadian priority setting exercise to determine the Top 10 Retinoblastoma Research Priorities was completed. These priorities were created with the aim to align research that is most relevant and valued by patients and health professionals with the funding that is available.

During the last five years, progress has been made through the CRRAB-supported project-specific working groups to address three of the 10 research priorities:

• Priority # 1: Early Diagnosis
• Priority # 3: Psychosocial Support
• Priority # 9: Pathway of Care

Working Groups

The working groups, with the support of CRRAB who facilitates patient partnerships, meet as needed. The working groups include a diverse group of participants including patients, researchers, and health professionals. If you are interested in joining a working group, please email retinoblastoma.research@sickkids.ca to be invited to the next meeting.

Awards

A new addition to this year’s symposium was the awards ceremony to celebrate members of the RB community who have significantly contributed to CRRAB initiatives. Those recognized this year include:

Patient Champions

• Michelle Prunier
• Mary Connolly-Wilson
• Taline Dorna

Research Champions

• Dr. Jennifer Steeves

Health Professional Champions

• Dr. Katherine Paton
• Beverley Griffiths
• Alissa Ulster

Special Acknowledgements

• Serge Dorna

Partnership Award

• Canadian Retinoblastoma Society

Child Life Session

Morgan Livingstone, CCLS

Hosted by Certified Child Life Specialist, Morgan Livingstone, child life activity sessions took place during both days of this year’s Retinoblastoma Research Symposium. Children participating in-person and virtually were guided through specialized activities while adult attendees could observe and learn more about the importance of effective coping through play, preparation, education, and creative self-expression.

During Saturday’s session, the children made ’EYE am Special’ prosthetic eyes, during which they used household items (stickers, magazine clippings, and markers) to design unique prosthetic eyes to represent themselves in an activity that relied on the use of their creativity . On the second day of the symposium, children were led through a puppet making activity. Each child made a personal puppet and then had the opportunity to shared the unique features and qualities of their puppets to the group. 

If you missed the opportunity for your child complete these activities at the symposium, you can download the instructions and worksheets here.

Canadian Retinoblastoma Research Society (CRBS)

The Canadian Retinoblastoma Society is a registered charity run by a team of committed volunteers, whose mandate is to provide education, advocacy and peer support to Canadians touched by RB. For more information on CRBS please visit rbsociety.ca.

Survivor Panel Discussion

Genevieve Savoie, CRBS president, moderated a panel discussion with RB survivors Jennifer Baca, David Schefter, and Natalia Frasunkiewicz-Watson. The session began with an explanation of CRBS’ mission and values. Next, each panelist had the opportunity to share their own personal story. The session concluded with audience question-and-answer which led to discussions around topics including family dynamics, RB support, genetics, and more.

Gathering

On day two of the symposium CRBS founder Lisa Simson shared her experience of having a child affected by RB. Throughout the 1980s and 1990s, without any existing support networks for families, Lisa formed the Retinoblastoma Family Association that held meetings, created newsletters, hosted fundraisers and shared survivor stories. Brian Cohen, CRBS Secretary-Treasurer, then discussed the transition from the Retinoblastoma Family Association to the Canadian Retinoblastoma Society over the past three decades.  

Thank You

We would like to thank everyone who attended the 2023 Retinoblastoma Research Symposium. Without your commitment and involvement, we are unable to support patient-oriented RB research!

“Cup of Tea” Journal Club March 2023

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, March 21, 8:00 – 9:00 PM ET. Our speakers will be Leslie Low, retinoblastoma parent, and Kimberly Courtney, family lead coordinator. Together they will be discussing the article, “An exploratory study of sleep habits in school-aged survivors of retinoblastoma” for which they recently wrote a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, March 21, 2023, 8:00 PM ET

Duration: 60 minutes

Topic: Sleep habits in school-aged survivors of retinoblastoma

Meeting Link: https://zoom.us/j/99800046240?pwd=aEkzUWozZmV2MVFoOTBRYS82bjZNZz09

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If you missed our last “Cup of Tea” event on, “Patients with retinoblastoma and chromosome 13q deletions have increased chemotherapy-related toxicities” led by Jillian Purdy and Dr. Furqan Shaikh you can watch the recording or listen to the podcast version now.

Video recording of the CRRAB “Cup of Tea” Journal Club that was held December 20, 2022.

Podcast of the CRRAB “Cup of Tea” Journal Club that was held December 20, 2022.

How Does it Feel to Attend the Retinoblastoma Research…

Author: Roxanne Noronha

Each year, CRRAB hosts a Retinoblastoma Research Symposium to bring together retinoblastoma patients, survivors, family members, researchers, and health professionals to connect with peers, learn from each other, and discuss the future of retinoblastoma research and advocacy. While this main purpose is true, it may be difficult to imagine the feeling of attending the symposium if you haven’t participated before. Read what past attendees shared about their experience at the symposium.

[This is a] great opportunity to connect and continue to build relationships with patients and professionals. It helps me feel more informed and confident in advocating for my child’s care. This meeting really helps keep me motivated to continue to participate in CRRAB.

We (CRRAB) have developed so much as a group. Each year we are becoming more influential to others.

The research workshop is the strongest and most meaningful aspect of the symposium. [There’s] value in collaborating with the RB community.

It was great to meet so many people. I didn’t know anyone [in the community] prior to attending.

I have given feedback into studies that has been important. I have been able to connect with patients and professionals I wasn’t able to reach before.

I feel that I have contributed to the promotion of patient voices in research.

It has given us a voice! It connects us to the professionals we didn’t know existed and helps us understand research better. It helped us recognize how many people there are that are fighting for a better future for retinoblastoma.

Attend the next symposium on January 28-29, 2023. Click here to learn more about the upcoming event and register.

“Cup of Tea” Journal Club December 2022

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, December 20, 8:15 – 9:00 PM ET. Our speakers will be Jillian Purdy, retinoblastoma parent, and Dr. Furqan Shaikh, pediatric oncologist. Together they will be discussing the article Patients with retinoblastoma and chromosome 13q deletions have increased chemotherapy-related toxicities for which they recently wrote a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals, and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, December 20, 2022, 8:15 PM ET

Duration: 45 minutes

Topic: Chemotherapy-Related Toxicity in Patients with Retinoblastoma and Chromosome 13q Deletions

Meeting Link: https://zoom.us/j/94829272745?pwd=Uk91Wi9HSk1mVy9ZMGZqOFMxaFhEdz09

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If you missed our last “Cup of Tea” event on Health Related Quality of Life of Retinoblastoma Survivors led by Michelle Prunier and Alissa Ulster you can watch the recording or listen to the podcast version now.

Research Perspective: Including Patient Partners in Research 

Author: Farheen Khan

In the Fall of 2021, I began pursuing a master’s degree in the SickKids Department of Ophthalmology. Being under the supervision of CRRAB co-lead Dr. Helen Dimaras I was introduced to the concept of patient engagement in research and have been fortunate to have patients involved in various stages of my thesis project thus far. My project focuses on adapting a patient-reported outcome measure (PROM), a questionnaire designed to evaluate health-related outcomes from a patient’s perspective for retinoblastoma survivors and two additional groups of ophthalmology patients. 

Currently, no well-validated retinoblastoma-specific PROM exists. However, previous research has identified that treatment outcomes related to appearance are important to retinoblastoma survivors. The FACE-Q is a well-validated PROM that was developed to evaluate such outcomes in patients who had craniofacial surgery. For this project specifically, the aim is to adapt the FACE-Q by interviewing survivors and parents to assess its comprehensibility, comprehensiveness, and relevance to their or their child’s lived and treatment-related experiences. The feedback received from patients is then subsequently analyzed and shared with an interdisciplinary team of scientists, health professionals, and patient partners to discuss how to best modify the PROM based on the study participants’ feedback. 

Through designing this study, I have experienced firsthand how much a study can be greatly improved by involving patients as research partners. For instance, while designing my study protocol, I incorporated the patient partners’ feedback to ensure that recruitment would be conducted in a way that would be most comfortable for the participants. While designing my interview guide, in addition to the methodologically relevant probes, I was able to include probes suggested by the patient partner. As someone who primarily learned about retinoblastoma and the other ophthalmologic conditions of interest through scientific literature, these additional probes were different from what I had developed and during the participant interviews I saw that they facilitated richer and more holistic discussions. Also, while designing the consent forms, it was critical for all its content to be conveyed as accurately and simply as possible. Through the patient partners’ input, necessary edits were made to attain this goal.  

During the interdisciplinary meetings to discuss the modifications to the PROM, it was interesting to note both the similarities and slight differences between the experiences and opinions of the health professionals and patient partners. As the purpose of the study was to develop a comprehensive and relevant PROM, from both the health care service and the patient perspective, learning to balance these interrelated views through open, collaborative, and inclusive discussions was enriching.  

Overall, I have found the patient engagement component of my project to be very fulfilling. It has brought to light how resourceful the lived expertise of patients is in guiding meaningful research. 

Research Update: Evaluating Psychosocial Needs of Retinoblastoma Patients and…

Authors: Ivana Ristevski & Roxanne Noronha

Background

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)?” Retinoblastoma patients have distinct psychosocial needs and research has consistently demonstrated that Canadian retinoblastoma patients, parents, and survivors desire more psychosocial support.

In 2018, CRRAB collectively agreed to first address Priority #3, and a working group of patients, health professionals and researchers was developed to address this priority. This “Priority #3 Working Group” developed protocol to:

• Aim 1: Define supportive care needs of retinoblastoma families in Canada
• Aim 2: Develop supportive care intervention for retinoblastoma families
• Aim 3: Test supportive care intervention for retinoblastoma families

Despite five grant applications, funding has not been secured for this project. Therefore, a scaled-back version of the project was proposed, focusing on Aim 1, determining supportive care needs and distress of retinoblastoma parents and survivors. This study is an important first step, gathering information necessary for the development and evaluation of the proposed psychosocial care intervention (to be addressed in a future study).

Research Update

Participant recruitment for this study is now ongoing! The study received Research Ethics Board approval and officially launched on August 10!

With a recruitment goal of 400 participants, 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. To support this plan CRRAB has re-formed the Priority #3 Working Group. The Working Group currently meets bi-weekly to discuss recruitment methods and provide feedback on study recruitment materials.

Get Involved

1. Participate in the study!

All retinoblastoma parents/caregivers and patients/survivors over 16 years of age who received all/part of their care in Canada are urged to participate. We need your participation in order to improve psychosocial care for patients and families affected by retinoblastoma. Complete the survey here: https://bit.ly/RBneeds

Understanding all family members’ unique perspectives is of utmost importance to uncover the needs of the whole community. Please encourage all eligible members of your family to participate by completing the survey!

2. Share study information to your networks!

Share information about the study through social media or through your personal or professional connections to families affected by retinoblastoma.

3. Join a Working Group meeting!

Join the next Working Group meeting to support this study’s recruitment efforts. The meeting is open to anyone interested including patients, healthcare professionals, and researchers.

Email retinoblastoma.research@sickkids.ca for a calendar invitation and zoom link.

“Cup of Tea” Journal Club September 2022

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, September 20, 8:15 – 9:00 PM ET. Our speakers will be Michelle Prunier, retinoblastoma survivor, and Alissa Ulster, social worker. Together they will be discussing the article A Review of Literature on Health-Related Quality of Life of Retinoblastoma Survivors for which they recently wrote a plain language article summary.

To incorporate feedback from our community, we are holding this event on both Zoom and Gather Town. Joining the event in Gather Town will allow you to easily interact with fellow audience members to more closely mimic an in-person gathering. This platform was previously used for our 2022 Retinoblastoma Research Symposium this past January. A guide to navigating Gather Town can be found here. As an alternative you are also able to join the event using the standard virtual meeting format through Zoom.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, September 20, 2022, 8:15 PM ET

Duration: 45 minutes

Topic: Health Related Quality of Life of Retinoblastoma Survivors

Zoom Meeting Link: https://zoom.us/j/92565686616?pwd=ZWdWU3NmaG5LSEpwODBGUFFYTmZSZz09

Gather Town Room Link: https://app.gather.town/app/4hDnwumd0eE3LIic/Cup%20of%20Tea%20Lounge

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If you missed our last “Cup of Tea” event on Replacement Times for Ocular Prosthesis led by Taline Dorna and Matthew Milne you can watch the recording now.

“Cup of Tea” Journal Club July 2022

The CRRAB “Cup of Tea” is a quarterly journal club intended to bring the Canadian retinoblastoma community together for an informal discussion on research. During this meeting, speakers provide a plain language summary of a research article then lead discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, July 19, 8:15 – 9:00 PM ET. Our speakers will be Taline Dorna, retinoblastoma parent, and Matthew Milne, ocularist. Together they will be discussing the article Replacement Time of Custom Ocular Prosthesis in Children: A Review Article for which they recently wrote a plain language article summary.

We invite all members of the retinoblastoma community including those with lived experience of retinoblastoma, health professionals and researchers to participate in this free virtual event. In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, July 19, 2022, 8:15 PM ET

Duration: 45 minutes

Topic: Replacement Time for Ocular Prosthesis

Meeting Link: https://zoom.us/j/94130520575?pwd=ck9BUUg4K3JUb3BUbTVwNm1Xbm1TZz09

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If you missed our last “Cup of Tea” event on Early Monocular Enucleation and Neural Development led by Mitch Hendry and Dr. Jennifer Steeves you can watch the recording now.

Developing a Cup of Tea: Patient & Researcher Perspective

Author: Mitch Hendry

It’s hard to be interested in something you don’t understand. Remember being a kid at your parents’ dinner parties? I remember being bored to tears by “adult conversations”. If you had asked me back then, I probably would have said that adult conversations were boring. Now I think it would be fairer to say that I didn’t understand what was interesting about them. As you grow up the things that you have interest and experience in change—when you were a kid, maybe you were into toys and games. When you were in your teens, maybe celebrities and dating. As an adult, careers and houses. There are phases we all go through as we get older where our interests change and our experiences change with them.

A lot of us have interest in science (did anyone else want to be an astronaut or doctor when they grew up?) but there is a barrier to gaining scientific knowledge. It takes time and effort to read, re-read, internalize, and understand scientific literature. And it certainly doesn’t help that scientists insist on using words that are harder to read, harder to pronounce, and harder yet to understand. It is easy to feel disempowered when you come up against a piece of scientific literature and realize, after reading the first paragraph, that you have no idea what’s going on. It is easy to feel like you aren’t cut out for this, that you should leave science to people in white coats with degrees and letters like “MD” or “PhD” behind their names. I wanted to write a plain language summary to turn a piece of science into something people could understand, and to encourage others to take on the challenge of deciphering primary literature.

I am somewhat guilty of fulfilling the stereotype of a “science person”. I don’t wear a white coat at my day job or have any letters behind my name, but I do have a degree in genetics. Yet, despite my background in biology, I was way out of my element trying to summarize a functional brain study. CRRAB helped to coordinate two helpful meetings between myself and Dr. Steeves (who insists I call her Jen). Jen was happy to explain everything in the article—I needed clarification on pretty much all of the acronyms. I also needed clarification on what the big finding actually was and how the images of lit-up brains were related to that message. Because I was working full-time and we were only able to chat twice, I did have quite a bit of independent work to do between meetings. Fortunately, the plain language summaries are not on a strict release schedule so I could take my time working through the article and writing my summary. Once we decided to present at a Cup of Tea, I had a number of weeks to prepare a slide deck and practice my presentation. Jen was also happy to review my slides and provide helpful images to explain concepts in the presentation.

All in all, I really enjoyed the project and it was a pleasure to work with Jen! It was exciting to dive into something that I knew almost nothing about and come out of the experience feeling like I could explain it to others. I have also felt for some time that communicating science to the public is an area of great need (in the wake of the COVID-19 pandemic, it is not hard to see that the ability to communicate science effectively has far-reaching consequences!). CRRAB’s plain language summaries are a great way to get 1-on-1 access to a scientist and try your hand at deciphering an article at your own pace.

I am looking forward to working on more projects like this with CRRAB (as a survivor and hopefully as a health professional) in the future!

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Author: Dr. Jennifer Steeves

I was very pleased when I heard that one of the papers from my research lab was chosen to be developed into a plain language summary and Cup of Tea presentation. I was even more pleased once I met Mitch, the recent Western University graduate who was presenting the paper to the retinoblastoma community.

I must admit that I felt a bit badly that the paper chosen is actually one of our more difficult papers with less-than-straightforward findings but this was a challenge that Mitch met with ease! Mitch and I had some correspondence over email and then a couple of Zoom meetings. It was really great to hear Mitch’s journey with retinoblastoma and to learn his personal perspective on the research and its results. I appreciate this very much.

The Cup of Tea meeting itself was also an excellent experience and Dr. Krista Kelly, who was the lead author on the paper but is now conducting research in Texas, was able to attend since the event was held virtually. The Cup of Tea and the process around it was a collaborative and collegial experience and I look forward to repeating it with other papers from my lab in future!