Retinoblastoma Research and You! Booklet Co-Creation

Author: Ivana Ristevski

The Retinoblastoma Research and You! booklet was co-developed by patients, health professionals, and researchers as a tool to educate and recruit Canadian retinoblastoma families to CRRAB. Through several Regional Working Group meetings, members oversaw all tasks associated with booklet development from choosing the key points and topics included, to deciding the flow of information, to creating designs and diagrams. The input and collaboration of many CRRAB members resulted in the creation of the final booklet currently available.

A key component to the booklet development process was the utilization of two virtual workshops in which patients, health professionals and researchers worked with a graphic designer to discuss design elements, finalize diagrams, and collaboratively design the featured pages of the booklet.

One of our workshop participants used his professional expertise and suggested the use of a QR Code so the booklet reader would have a quick way of connecting with CRRAB. This input led to having the QR Code inserted on the back of the booklet to help connect the reader to a feedback survey for the booklet as well as various resources on how to become a patient partner in research. Check out the back of the booklet to see for yourself!

Participants at the workshop also offered feedback and suggestions on our media toolkit which has been sent to various organizations who have a connection to retinoblastoma. This toolkit makes sharing information about the Retinoblastoma Research and You! booklet convenient for these organizations. Some workshop participants initially connected us with organizations who can use the media toolkit to share information about the booklet to reach a wider audience and find those affected by retinoblastoma who we may not have already reached.

By creating this booklet in a virtual workshop setting we were able to receive feedback from patients with various experience who not only brought their lived experience of retinoblastoma but also their personal and professional skills.

Read more about the Retinoblastoma Research and You! booklet here.

If you are interested in participating in a Regional Working Group, you can attend our next meeting. Email us for details: retinoblastoma.research@sickkids.ca.

“Cup of Tea” Journal Club June 2021

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, June 15, 8:30 – 9:00 PM ET. Our speakers will be Dr. Ashwin Mallipatna, ophthalmologist, and Jay Kiew, retinoblastoma survivor. Together they will be discussing the article Global Retinoblastoma Treatment Outcomes: Association with National Income Level 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, healthcare professionals and researchers to participate in this free virtual event.

Event Details

Time: Tuesday, June 15, 2021, 8:30 PM ET

Duration: 30 minutes

Topic: Global Retinoblastoma Treatment Outcomes

Meeting Link: https://zoom.us/j/97141546172?pwd=VTRHREgrSXRtenFKVkN3MDZZSko0QT09

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If you missed our last “Cup of Tea” event on Screening for Pineal Trilateral Retinoblastoma led by Dr. Katherine Paton and Barbra Mohan you can watch the recording now.

Patient Story: Attending the 2021 Virtual Retinoblastoma Research Symposium

Author: Clayonia T. Colbert-Dorsey

The first months of the New Year 2021 has recently passed into the annals of history, yet the lessons learned remain. Foremost in thought is my ability to have participated as an attendee at my first Retinoblastoma Research Symposium. As an international attendee, I was and am grateful that doors were opened to allow broad, international participation by all those who encompass the village that is retinoblastoma. As I consider our collective journeys—battling with, overcoming despite, or surviving through—I am drawn to the word, “Ubuntu” a South African term meaning, “I am, because you are.”  Doesn’t that represent “us” as a community!? 

The 2021 Retinoblastoma Research Symposium, although held virtually, is a reminder of the interdependence that flows between our collective body. As researchers, parents, survivors, spouses, extended family, health practitioners, or other allies united within the battle, we were able to join in common-cause discussions of championing the retinoblastoma narrative. Much like the truly life-changing fellowship that occurs during the One Retinoblastoma World Conference, the Retinoblastoma Research Symposium created needed dialog, strategic planning, resiliency building, and one of my favorites—reuniting of old friends from across the globe.

Together, we share a path that has challenged our humanity.  For many of us, that which once seemed like lonely despair, has turned into an affirmation of what we embody—a rainbow of hope, created by a quilt of many patches. To this end, I applaud the work taking place in Canada!  We need more coalition building, not to mention greater efforts towards heightening awareness, especially regarding retinoblastoma research. Challenges that my parents experienced at the time of my diagnosis are, as we discussed, challenges that parents of today still face. This is unconscionable!  

Therefore, in hope, I believe our ability to gather together, creates the village. Through our efforts, one day, we will overcome! Hats off to the Canadian Retinoblastoma Research Community for sounding a clarion call towards this quest.

2021 Virtual Retinoblastoma Research Symposium

The annual Retinoblastoma Research Symposium once again proved to be a success! Although the COVID-19 pandemic precluded us from meeting in person we were able to gather virtually on January 16, 2021 to grow our community and continue building momentum for patient-oriented retinoblastoma research in Canada. The symposium gathered many stakeholder groups including retinoblastoma patients, survivors, family members, advocates, researchers, and health professionals to learn, connect, and discuss the future of retinoblastoma research.

Keynote Presentation

Rachel E. Martens

The first session of the day was a keynote presentation by Rachel E. Martens, Family Engagement Facilitator at CanChild and parent-in-research. In her engaging presentation Rachel talked about finding meaning through research collaboration. Rachel spoke of her experience as the parent of a child with medical complexities and how becoming a research partner was an extension of her family’s care experience. The presentation spoke to the importance of patient partners outlining goals they wish to achieve through partnership in research and developing an understanding of how their engagement fits into the framework of their life. She also discussed the role of researchers, in developing engagement opportunities that are accessible to patients and fostering open communication with partners. Rachel’s presentation included tips for all stakeholder groups, energizing and motivating listeners to actively engage in the activities of the symposium and CRRAB endeavours throughout 2021.

CRRAB Annual General Meeting

The symposium then moved onto the foundation of the event, the 5^th CRRAB Annual General Meeting. The meeting highlighted our group’s purpose and structure, then reviewed our 2020 goals, challenges, and accomplishments.

To begin discussing CRRAB’s goals for 2021 we used an online interactive whiteboard tool to gather feedback from the CRRAB membership in the virtual setting. Suggestions were then organized and discussed to develop specific goals that align with the aims of the Canadian Retinoblastoma Patient Engagement Strategy:

1.  “How can we share research results with people affected by retinoblastoma?”

1. Create 1 video plain language summary to be shared by social media in an interactive post.
2. Create 4 written plain language summaries (one per quarter) to be shared by social media through 4 unique posts, quarterly newsletter, and housed on the CRRAB website.
3. Develop a “Cup of Tea” virtual journal club as an opportunity to discuss research in plain language (one patient with one researcher or health professional guide an informal discussion on a topic in retinoblastoma research).  

2.  “How can we include a large and diverse group in CRRAB?”

1. Recruit a Francophone patient and clinician to join CRRAB.
2. Enroll one patient family from Quebec to the Canadian Retinoblastoma Research Registry. 
3. Enroll 12 newly diagnosed families to the Canadian Retinoblastoma Research Registry. 
4. Enroll 10 additional families to the Canadian Retinoblastoma Research Registry. 

Everyone is encouraged to contribute towards actualizing these goals. Attend a Regional Working Group meeting to see how you can contribute.

Regional Working Group Meetings

Central/East Coast Working Group meets on the 2nd Wednesday of each month at 12:00 PM Eastern Time.

West Coast Working Group meets on the 2nd Saturday of each month at 12:00 PM Eastern Time.

Email retinoblastoma.research@sickkids.ca for information on how to attend this meeting or to learn how you can contribute offline.

Child Life Session

Morgan Livingstone, CCLS

During the Child Life Session at this year’s Retinoblastoma Research Symposium children were guided through a specialized activity while adult attendees were welcome to attend to learn more about child life and the importance of effective coping through play, preparation, education, and creative self-expression activities by Certified Child Life Specialist Morgan Livingstone.

In the session children were led through the creation of a set of distraction cards. When children undergo procedures a distracting activity or toy can help in coping. These toys can reduce stress and increase cooperation in children coping with illness. Distraction cards are a fun way to for children to challenge themselves by finding specific items, images, and pictures, and can be used during checkups and procedures at the hospital or clinic. Children were able to create two distraction cards, one with shapes and images to find items using vision and another with textured stickers and foam shapes to find items using touch. These pages full of fun are a positive game/distraction for children to use at home or to take to appointments to challenge themselves, their family members, and their medical team to find it!

While not able to gather in person this child life activity was designed to be an immersive experience for the children despite the virtual setting and was specifically tailored to engage children with visual impairments. Find instructions to make your own distraction cards here.

An important part of all child life activities is an engaging (and sometimes silly) story time. “The Book With No Pictures” by B.J. Novak is a simple yet imaginative book that made all of us laugh. This book really has no pictures, and relies on mischievous text to make the reader say silly sounds, in ridiculous voices, even if the words say…BLORK or BLUURF, to the delight of all the listeners. This book was selected as a part of the child life activity to focus on fun with words, not images, in telling a delightful story for kids of all ages.

Networking Session

To offset the loss of personal connection that we normally see at our in-person symposia this virtual event included a specific networking session where members were invited to join a breakout room based on their interests (with topics of parenting, survivorship, and the unilateral retinoblastoma experience highlighted) to have casual conversation with those of shared interests. This session allowed patients, clinicians and researchers to meet in small groups to strengthen the bonds of our community.

CRRAB Tools Breakout Sessions

In the first breakout session of the day members were broken up into small groups to discuss the various tools CRRAB uses to achieve our goals.

Canadian Retinoblastoma Research Registry Breakout Session

Jill Robert & Kaitlyn Flegg

Introduction:

In 2016, we developed the Canadian National Retinoblastoma Patient Engagement Strategy. Patient engagement in research shifts the idea of a patient (i.e., individuals with personal experience of retinoblastoma and their informal caregivers) from a passive participant to a meaningful and active partner in all aspects of the research process. But, without patients, there can be no patient engagement in research. Finding a diverse, representative group of retinoblastoma patients is at the cornerstone of having an effective national patient engagement strategy. To address this, we developed the Canadian Retinoblastoma Research Registry.

Summary of Session:

During the session we discussed the following opportunities for expanding the Canadian Retinoblastoma Research Registry:

1. Inclusion of researchers and health professionals
   • Feedback from breakout session participants: The inclusion of researchers and health professionals would align the Canadian Retinoblastoma Research Registry with the Canadian National Retinoblastoma Patient Engagement Strategy and reflect all stakeholders involved.
2. Inclusion of international patients, researchers and health professionals
   • Feedback from breakout session participants: Expanding the scope of the Canadian Retinoblastoma Research Registry is a positive way forward, provided the objective remains clear throughout the expansion.
3. Enhanced branding
   • Feedback from breakout session participants: The Canadian Retinoblastoma Research Registry title may be misleading or intimidating. Several other titles were suggested including terms like partnership, collective and group.

Next Steps:

To get involved in the expansion of the Canadian Retinoblastoma Research Registry, attend the monthly Regional Working Group Meetings hosted by CRRAB.

CRRAB Social Media Breakout Session

Michelle Prunier & Roxanne Noronha

Introduction:

The purpose of CRRAB Social Media is to engage with a multidisciplinary group of stakeholders (including those affected by retinoblastoma, researchers, health professionals, researchers, and advocates) to increase participation in CRRAB and enrolment in the Canadian Retinoblastoma Research Registry. When reviewing responses from members of the Canadian Retinoblastoma Research Registry we have discovered that social media is a leading method in which members learn about CRRAB and patient-oriented retinoblastoma research in Canada. Over the last few years CRRAB has assembled a small team of volunteers to continually develop content for our social media platforms (currently Twitter, Facebook, and Instagram) so that we can continue to develop a diverse group of retinoblastoma patients interested in being active partners in research.

Summary of Session:

During the session we discussed the following topics to improve the CRRAB social media strategy:

1. Using social media in novel ways
   • Feedback from breakout session participants: Incorporating more video content and increasing use of stories function on Instagram to improve audience interaction.
2. Increasing online engagement with social media content
   • Feedback from breakout session participants: Optimize hashtag usage, target posts to populations per platform, coordinate with external groups to share our content.
3. Improving translation from post engagement to enrolment in the Canadian Retinoblastoma Research Registry
   • Feedback from breakout session participants: Increase amount of posts about the Canadian Retinoblastoma Research Registry.

Next Steps:

The CRRAB  Social Media Team is actively incorporating these suggestions in our strategy for 2021. If you would like to join our team of volunteers please contact retinoblastoma.research@sickkids.ca and please continue to share CRRAB posts to your social media accounts!

Retinoblastoma Research Booklet Breakout Session

Leslie Low & Ivana Ristevski

Introduction:

Due to the restrictions of COVID-19 the usual methods of discussing retinoblastoma research in-person are no longer available. As a result CRRAB needed to develop alternative options to reach our goals of recruiting new and current retinoblastoma families to the Canadian Retinoblastoma Research Registry. To solve this problem, the CRRAB Regional Working Group members have been working to create a pamphlet to introduce retinoblastoma patients, survivors, and family members to the benefits of patient engagement in retinoblastoma research. Through discussion at the Regional Working Group Meetings over several months, the idea of a pamphlet transformed into a booklet with not only information about patient engagement, but also about CRRAB and personal stories of patient partnership in retinoblastoma research.

Summary of Session:

During the breakout session, we reviewed the current state of the Retinoblastoma Research Booklet project and the following topics:

1. What worked and what doesn’t in the current draft
   • Feedback from breakout session participants: Positives include patient stories and use of plain language but there is a need to improve the overall design and colour scheme, and include images of diverse patient groups.
2. Methods to widely distribute the booklet upon its completion
   • Feedback from breakout session participants: Build relationships with external organizations and service providers to share the booklet broadly.

Next Steps:

We were awarded the Ontario SPOR Support Unit EMPOWER award to complete development of the Retinoblastoma Research Booklet and get it into the hands of as many retinoblastoma patients, survivors, and family members as possible. If you are interested in helping with this project, attend the monthly Regional Working Group Meetings hosted by CRRAB.

CRRAB Website Breakout Session

Serge Dorna & Dr. Ashwin Mallipatna

Introduction:

The purpose of the CRRAB website is to achieve several goals using one uniform tool. The site informs the public of upcoming CRRAB events and ongoing research, and aims to recruit patients to the Canadian Retinoblastoma Research Registry. The website has a blog to feature stories and updates from the broad CRRAB membership and also provides a central location to organize the efforts of the CRRAB Regional Working Groups. The website has evolved from a simple blog format to a central repository for the CRRAB membership. Over the past few years our team has used an iterative process to add new sections and improve the site, reflecting the growth of CRRAB.

Summary of Session:

The website breakout session provided participants with an open forum to make suggestions to improve this tool. Suggestions were given to improve the use of the website by all stakeholder groups; these suggestions included:

• Improving accessibility functions (e.g. adding the option to easily change font size).
• Addition of a section displaying how research conducted has been translated to real world improvements in patient outcomes.

Next Steps:

These suggestions are being incorporated into the work plan for website improvements. To get involved in these efforts please contact retinoblastoma.research@sickkids.ca.

Priority Research Project Breakout Sessions

In the next breakout session members were broken up into small groups to learn more about projects under way addressing three of the Top 10 Retinoblastoma Research Priorities.

Retinoblastoma Research Priority #1: Early Diagnosis Breakout Session

Marissa Gonzalez & Dr. Ashwin Mallipatna

Introduction:

Retinoblastoma Research Priority #1 asks, “How to increase early diagnosis of retinoblastoma (i.e. decrease age or stage at diagnosis)?” The importance of this priority is clear as earlier diagnosis of retinoblastoma will lead to better outcomes and require less intensive treatment.

Last year, at the 2020 Retinoblastoma Research Symposium members of a research workshop took a deeper look into this priority and outlined the steps required to obtain a retinoblastoma diagnosis in Canada. The group then discussed the barriers that could appear at each of these steps that could delay the process of getting a diagnosis for a child. The members of this workshop then formed a Working Group, comprised of patients, researchers and health professionals who have worked throughout the last year to develop three projects designed to assess and address the barriers to early diagnosis of retinoblastoma.

Summary of Session:

After presenting a brief update on the three projects currently underway this session welcomed members of the initial Priority #1 Working Group and others interested in early diagnosis to go “back to the drawing board” where participants once again reviewed the retinoblastoma care pathway and brainstormed possible barriers between onset of retinoblastoma, detection of first signs of retinoblastoma by parents/family members, detection of retinoblastoma by general healthcare providers, and confirmation of retinoblastoma diagnosis by an eye specialist.

Suggestions from this session include:

• Expanding thoughts beyond the pathway initially described to create awareness for families with a known history of retinoblastoma and those that manage their care so that future parents are aware of the options available to them during family planning.
• Develop training so lessen the gap between primary physician knowledge surrounding retinoblastoma and referral to specialized care.
• Focusing on global collaboration so that efforts underway in other countries can be expanded on or replicated in Canada.

Next Steps:

These suggestions and the initial projects generated around this priority continue to be developed by the Priority #1 Working Group which meets regularly to advance these projects. The next Working Group Meeting will be held during the third week of March. To join us please contact retinoblastoma.research@sickkids.ca.

Retinoblastoma Research Priority #3: Psychosocial Support Breakout Session

Leslie Low & Kaitlyn Flegg

Introduction:

Retinoblastoma Research Priority #3 asks, “How to provide culturally competent social, emotional, and psychological support to retinoblastoma patients, survivors, parents and families (at diagnosis and beyond)?” In order to answer this research priority, we must first understand the psychosocial needs of retinoblastoma patients, survivors and their families. The Canadian Retinoblastoma Research Advisory Board selected this priority to focus on first.

A study and grant proposal were co-developed by a Working Group comprised of patients, researchers and health professionals in 2018-2019. The grant proposal was submitted to two competitions but was not selected for funding. Results of a third funding competition are pending.

Summary of Session:

When the proposed study is funded, participant recruitment will be essential to accurately characterize the psychosocial needs of retinoblastoma patients, survivors and their families. During the session we discussed facilitators and barriers to recruitment and retention of patients and patient partners.

Suggestions from the brainstorming session included:

• Communicate with the community about the study in an engaging and jargon free manner.
• Convey the value of the study to patients including: (i) benefits to other families and survivors and (ii) opportunity to give back and (ii) chance to share their story.
• Make sure the study is: (i) accessible, (ii) convenient and (iii) includes compensation (if possible).
• Consider establishing champions or stakeholders across the country to advocate for the study.
• Recruit using diverse methods including: (i) other organizations (i.e., Canadian Retinoblastoma Society), (ii) social media, (iii) healthcare providers including ocularists, and (iv) in person discussions.

Next Steps:

Upon receipt of funding, the original Priority #3 Working Group will resume meeting to plan for study implementation. Updates on funding decisions and Priority #3 Working Group meetings will be shared at the monthly Regional Working Group Meetings hosted by CRRAB.

Retinoblastoma Research Priority #9: Pathway of Care Breakout Session

Alena Vincent & Ivana Ristevski

Introduction:

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?”

Based on the “Get Well Maps” concept the Retinoblastoma Journey Map is a patient-centred pathway of care developed with the help of retinoblastoma survivors, parents, researchers, and health professionals. The Retinoblastoma Journey Map is currently being tested with a small group of families over the course of six months via a quality improvement project at SickKids.

Summary of Session:

At the time of the symposium, we had yet to reach the project’s recruitment goal and had encountered many families who had declined participation. During the breakout session we asked for feedback on our approach when asking families to participate.

Suggestions from this discussion included:

• Presenting the map as a simple activity that is easy to complete and not time consuming.
• Telling families that the map can be used for those at any stage of their retinoblastoma journey.
• Highlighting that the map can be used to save information about their journey to then share with others.
• Explaining that the map is an engaging activity for all family members and children can get involved in the process as well.

During the session participants were also asked to brainstorm on how patients, researchers, and health professionals could be involved in interpreting the results of the project.

Suggestions from this brainstorming activity included:

• Starting with a trust-building activity between the groups.
• Sharing plain language summaries of relevant articles to help all participants have a good foundation of knowledge prior to the interpretation of results.
• Asking stakeholder groups to interpret results separately then bring all the thoughts together as a larger group to discuss the interpretations.

Next Steps:

Since this breakout session, feedback was utilized when contacting the remaining families and the project’s recruitment goal has been met. The results of this quality improvement project will be available by early Fall. If you are interested in participating in the discussion of the interpretation of the results, stay tuned for further updates at the monthly CRRAB Regional Working Group Meetings and via our quarterly newsletter.

Thank You

We would like to thank everyone who attended the 2021 Virtual Retinoblastoma Research Symposium. Without your active involvement we are unable to build patient-oriented retinoblastoma research in Canada.

“Cup of Tea” Journal Club March 2021

The CRRAB “Cup of Tea” is a new 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 first “Cup of Tea” journal club will take place on Tuesday, March 16, 8:30 – 9:15 PM ET. Our speakers will be Dr. Katherine Paton, ophthalmologist, and Barbra Mohan, CRRAB RB Champion. Together they will be discussing the article Screening for Pineal Trilateral Retinoblastoma Revisited: A Meta-analysis 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, healthcare professionals and researchers to participate in this free virtual event.

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Event Details

Time: Tuesday, March 16, 2021, 8:30 PM ET

Duration: 45 minutes

Topic: Screening for Pineal Trilateral Retinoblastoma

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One Retinoblastoma World 2020 Conference Report and Session Recordings…

The Canadian Retinoblastoma Research Advisory Board was happy to co-host the One Retinoblastoma World 2020 conference.

As the fifth – and first virtual – meeting of this event, we were excited to have over 200 attendees participate in the conference live. We hope that through the weekend’s shared learning and novel partnerships, progress was made towards the goal of improving outcomes for those affected by retinoblastoma globally. 

We are happy to share that the conference report and session recordings are now available and can be accessed here.

Thank you again for joining us for One Retinoblastoma World 2020 and for working alongside us to provide life, sight and hope for all affected by retinoblastoma.

A Brief History of the Retinoblastoma Research Symposium

Author: Roxanne Noronha

The Retinoblastoma Research Symposium hosted by the Canadian Retinoblastoma Research Advisory Board (CRRAB) brings together retinoblastoma patients, survivors, families, healthcare professionals, and researchers to drive meaningful, co-directed retinoblastoma research that is relevant to patients and improves outcomes. 

CRRAB was founded in response to the need for inclusive, high-quality, and translatable retinoblastoma research and embodies the Canadian Retinoblastoma Patient Engagement Strategy to: 

• 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. 

Following its creation, the first CRRAB Annual General Meeting was held in December 2016. This meeting gathered stakeholders of the retinoblastoma research community to develop CRRAB’s purpose, goals, and governance structure.  

While engaging with the Canadian retinoblastoma community in the following year, we encountered an unmet need experienced by many families affected by retinoblastoma: connection to others in the community. In order to meet this, CRRAB hosted a Retinoblastoma Research Symposium in December 2017 to occur alongside the second CRRAB Annual General Meeting. The weekend-long Symposium also included a Family Gathering to provide an avenue for families to meet each other and meet clinicians and researchers; a Marketplace to showcase the services and programs available to those affected by retinoblastoma; a research workshop to build skills and make progress towards developing co-directed research studies; and a Child Life directed children’s program that allowed even the littlest community members a chance to connect.  

The success of the 2017 Retinoblastoma Research Symposium encouraged CRRAB to continue to hold the event. The 2019 and 2020 Symposiums drew greater attendance and connected a larger Canadian retinoblastoma research community.  

First CRRAB Annual General Meeting, December 3, 2016 

2017 Retinoblastoma Research Symposium, December 9 & 10, 2017 

2019 Retinoblastoma Research Symposium, January 26 & 27, 2019 

2020 Retinoblastoma Research Symposium, January 25 & 26, 2020 

Opportunities to be Involved

Please see below a list of current opportunities to get involved with the Canadian Retinoblastoma Research Advisory Board (CRRAB). 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! Volunteer two hours per month to create graphics and captions for the CRRAB Twitter, Facebook, and Instagram pages. 

French Translation 

CRRAB aims to better engage with the French-speaking retinoblastoma community in Canada. Please help us recruit these individuals by translating current CRRAB content and creating new material in French. Examples of materials include social media posts and blog posts. 

Article Summaries 

Write a plain language summary of a retinoblastoma research article. Patients together with healthcare professionals or researchers write a short summary of a recent scientific article and provide personal comments or critiques.  

Regional Working Groups 

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

RB Research Champions 

Act as a volunteer ambassador of CRRAB to promote patient engagement in research to patients, healthcare professionals, and researchers by sharing your story and participating in community outreach.  

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

Récit de Patient: Taline Dorna

Author: Ivana Ristevski

Translated by: Maryse Patenaude

For English version click here.

En plus d’être professeure, mère de trois enfants, épouse et aspirante écrivaine, Taline parvient à trouver du temps pour participer aux activités du CCCRR pour en apprendre plus, rencontrer d’autres familles, se tenir au courant des nouvelles recherches et faire une différence au sujet du rétinoblastome.

Le parcours de Taline à débuté lorsque son fils fut diagnostiqué avec un rétinoblastome unilatéral à 5 mois.

« Pendant environ 2 mois, mon époux et moi-même avions noté que notre fils avait un reflet inhabituel dans son œil gauche. Nous remarquions ce reflet surtout lorsque nous utilisions le flash de l’appareil photo de nos téléphones. Nous croyions au début que cela était dû à un mauvais éclairage ou au flash de l’appareil. Après un certain temps, nous avons remarqué que le reflet était aussi présent à la pénombre, en fonction de l’angle de la lumière. Puisque nous commencions à être inquiets, nous avons consulté son pédiatre, qui était elle-même perplexe puisqu’elle n’avait jamais vu cela ».

Ils ont par la suite consulté un ophtalmologiste qui les a référé immédiatement au SickKids, où ils ont pu obtenir un diagnostic et procéder aux traitements.

La participation de Taline et sa famille au CCCRR remonte à 2018, où, en participant à leur premier symposium, ils ont apprécié d’être impliqués dans des discussions sur des projets de recherches et dans la création de matériel pour augmenter la sensibilisation au Top 10 des Priorités en Recherche sur le Rétinoblastome. Les enfants ont particulièrement aimé leur participation au Child Life Program.  

En 2020, Taline a assisté à son deuxième symposium de Recherches sur le Rétinoblastome et participé à un atelier sur le design de vignettes visant à être employées pour le projet Retinoblastoma Journey Map, qui sera utilisé pour identifier les étapes de soins pour les familles ayant un enfant nouvellement diagnostiqué avec le rétinoblastome.

« En temps qu’enseignante, j’ai pu utiliser mes compétences et les appliquer dans un domaine qui sera une partie intégrante de la vie des patients et survivants du rétinoblastome ».

La collaboration à la recherche peut prendre de nombreuses formes  et le CCCRR contribue à faciliter cela en offrant plusieurs façons de s’impliquer, telles que la participation au Symposium annuel de Recherche sur le Rétinoblastome, le partage d’informations sur des occasions de participer à la recherche par le biais du registre RB ou en offrant des plateformes pour l’engagement, qui comprennent entre autres les appels mensuels du groupe de travail régional et les partenariats de projets spécifiques de patients.

« En étant impliqué dans le CCCRR, j’ai pu acquérir une meilleure compréhension sur le cancer dont a été atteint mon fils et utiliser mes compétences pour augmenter la sensibilisation au rétinoblastome ».

« Je suis présentement en voie de publier mon premier livre pour enfants au sujet d’un garçon atteint de rétinoblastome, qui perd son œil ordinaire et obtient un œil extraordinaire! Je voulais faire quelque chose pour honorer le nom de mon fils et aider les autres enfants atteints de RB à se sentir bien dans leur peau ».

Si vous souhaitez rester informé sur la recherche et les événements sur le rétinoblastome, inscrivez-vous au registre du rétinoblastome.

Si vous êtes intéressé à participer à l’une des activités du CCCRR, envoyez-nous un courriel à: retinoblastoma.research@sickkids.ca