Overview: The CRRAB Working Groups

1.Patient Engagement Working Group

“Nothing about us, without us”

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

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

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

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

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

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

2. Research Advisory Working Group

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

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

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

3. Research development working group

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

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

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

Upcoming: Calgary RB Family Day

Author: Leslie Low, retinoblastoma parent

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

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

Click here to register

Canadian Retinoblastoma Research Advisory Board

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

The main activities of CRRAB are:

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

Establishing the Top 10 Retinoblastoma Research Priorities

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

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

Top 10 Priorities

The Retinoblastoma Champion Program

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

Champion Program

The Retinoblastoma Research Registry

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

Progress Update from the Research Development Working Group

Author: Ivana Ristevski

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

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

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

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

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

Progress Update from the Research Development Working Group

Author: Ivana Ristevski

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

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

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

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

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

SUCCESS: 2019 Retinoblastoma Research Symposium

On January 26 & 27, 2019, the Retinoblastoma Research Symposium in Toronto proved to be a resounding success!

Patients and survivors, family members, researchers, and clinicians came together to learn from each other, connect with their peers, and discuss the future of retinoblastoma research and advocacy.

We’d like to thank everyone who attended the symposium this year, and we look forward to having another record-breaking turn out next year onJanuary 25 & 26, 2020!

If you’re interested in attending the 2020 Symposium, here is an example of what the weekend might have in store for you:

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ISOO Conference 2019

On March 22-26, 2019, the International Society of Ocular Oncology (ISOO) Conference was held in Marina del Rey, Los Angeles. ISOO is a non-profit organization which promotes the practice of ocular oncology which is a strong and independent subspecialty of ophthalmology with specific focus on eye tumors and cancers.

On Monday March 25th, ISOO’s program was focused on retinoblastoma. This allows clinicians, scientists, and trainees to share their research with an international audience. In that audience, the Canadian Retinoblastoma Research Advisory Board (CRRAB) was well-represented. Below are some examples of their participation:

Ivana Ristevski is a “Parent-in-Research.” She has been a member of CRRAB since 2017, where she participated in the priority setting project which led to the creation of the Top 10. Since 2018, she has also been member of the retinoblastoma team at The Hospital for Sick Children through her role as Clinical Research Project Coordinator.

At ISOO, Ivana delivered a poster and talk titled, “Top 10 Retinoblastoma Priorities: As Determined by Canadian Patients, Clinicians, and Researchers.” Ivana’s poster received the “Best Poster” award for the retinoblastoma program of the conference. Congratulations, Ivana!

Dr. Brenda Gallie was invited to deliver the inaugural A. Linn Murphree Lecture at the conference. Her presentation was titled, Linn’s Legacy: Bright Future for Retinoblastoma. Dr. Gallie presented the results of two case studies where chemoplaque was used as a novel approach to treat retinoblastoma after failure of first-line treatments.

Dr. Helen Dimaras presented the results of her comprehensive, retrospective review of clinically preventable causes of unfavourable retinoblastoma treatment outcomes at the Hospital for Sick Children from 2000 to 2015. Information gained by examining these events can identify areas for practice change and improve patient outcomes.

Max Gelkopf, a member of our group since 2017, shared the results of a research study that was used to determine whether CRRAB is an effective vehicle for engaging patients in retinoblastoma research. The findings suggest that CRRAB offers meaningful patient engagement.

While we highlight the activities of our CRRAB members in this article,
please click here if you’re interested in reading about all of the wonderful oral and poster presentations offered at ISOO 2019.

My Experience Interacting with Kenyan Policy Makers and Cancer…

Author: Hodan Mohamud

My name is Hodan and this past summer in partnership with the University of Nairobi, I was fortunate enough to be a research student in the Dimaras Lab. As a research student I utilized published findings that investigated Kenyans’ experiences with retinoblastoma to develop knowledge translation plans for retinoblastoma genetics. My project’s foundation was focused on a seminal paper that was published in 2017 by Gedleh et al., in which crucial information regarding retinoblastoma genetics was highlighted. Crucial information that ultimately needed to be brought to the awareness of stakeholders such as the government, advocacy groups and health care professionals.

The Kenyan National Cancer Control Program (KNCCP) was one of the knowledge translation plan’s targeted stakeholders. The KNCCP develops a National Cancer Control Strategy every five years and was in the process of prioritizing recommendations for the current strategy. Leveraging an invitation to one of the KNCCP’s monthly meetings, I took the opportunity to present a policy brief centered on current knowledge regarding retinoblastoma genetics in Kenya. Developing and presenting the policy brief was a nerve-wracking experience. I needed to deliver a great presentation so members of the KNCCP would be aware of the crucial findings from the paper. Fortunately, the members of the National Cancer Control Program were extremely encouraging and receptive to my presentation. We had continued conversations about how the KNCCP may incorporate and implement the findings into their future strategies.

Aside from interacting with policy makers, I also met with Kenyan cancer NGO’s. I was fortunate enough to meet with members of the African Cancer Foundation, Kenya Cancer Association, and Hope for Cancer Kids. Kenyan cancer NGO’s work extremely hard to create awareness around the prevention, treatment and management of cancer, alongside supporting those affected by cancer. Many of these organizations hold events in the community to initiate dialogue around health and cancer. One of the more memorable events that I attended was a health and wellness event held on July 7th by the Africa Cancer Foundation called MoveEat. The event promoted messages on how to lead a healthier lifestyle to reduce the risks of cancer. It was super fun, had lots going on and included bouncy castles, Zumba, yoga, and bubble soccer for event participants. It was a great way to get the community actively involved in thinking about their health. Similar events are held regularly by Kenyan cancer NGO’s!

This past summer I was able to witness the hard work required for Kenyan policy makers and cancer NGO’s to reduce the burden of cancer in Kenya. Presenting my policy brief to the KNCCP was a great learning experience to go alongside interacting with Kenyan cancer NGO’s. I hope conversations will continue to develop between researchers and policy makers so that crucial findings can make their way into policy that benefits all stakeholders.