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“Cup of Tea” Journal Club January 2026

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, January 20 at 8:00PM – 9:00PM Eastern Time. Our speakers will be Dhruv Kohli, Survivor, and Rod Bremner, Scientist. Together they will be discussing the article “Deneddylation of ribosomal proteins promotes synergy between MLN4924 and chemotherapy to elicit complete therapeutic responses” for which they have created 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.

Meeting Details:

https://ca01web.zoom.us/j/99246274026?pwd=p1LpvQodGxoN6Y5bVYLUddobp5iJwu.1

Meeting ID: 992 4627 4026
Passcode: 843404

Plain Language Summaries

Sharing and Caring: How Patients Helped Build a Biobank…

A teen’s perspective on the importance of biobanking while partnering with the patient community

Watch on Youtube
Listen on Spotify
Original Article

Original Authors:

Kaitlyn Flegg,

Roxanne Noronha,

Ivana Ristevski,

Ashwin C. Mallipatna,

Sheila O’Donoghue,

Tamsin Tarling,

Peter Watson,

Helen Dimaras

Original article date:

July 2024

Plain Language Summary Author(s):

Nikola Ristevski,

Helen Dimaras

Plain Language Summary Date:

September 16, 2025

Introduction

What is a biobank?

When I hear the word biobank, a couple of thoughts come to my mind. The first thought is storage; I think of that because they store the blood or tissue there. The second thought is science, because they help scientists conduct lots of research that one day could save many lives.

Why is Biobanking Important for Rare Eye Cancers?

Why are eye cancers hard to study? First, eye cancer is rare, so that means there are few cases, and it would be hard to find a lot of material to study. Eye cancer samples might be easier to collect in certain countries or certain environments. 

What is this article about?

This article we summarize here talks about a biobank – The Kids Eye Biobank – that enrolls children affected by all types of eye cancer. The article describes how the biobank works, how decisions are made and how they work with patients to get past the challenges of eye cancer being so rare. 

How does the biobank work?

A biobank is like of special library, but instead of storing books, it stores samples from people’s bodies. The biobank described in the article collects and stores eye cancer samples in special ‘liquid nitrogen’ freezers which keep things at a very low temperature, so the samples stay in good condition (Figure 1). The biobank also stores health information and photographs, like those the doctors takes of the eye (Figure 1). People donate these samples and allow access to their information to help scientists learn more about diseases and find better treatments. The biobank is run by caring grown-ups who make sure everything is done safely and that patient families always understand what is happening with their donations.

How does decision-making happen in the biobank? 

Decision making happens through 4 main committees, described below.

Operations Committee (internal)

Think of this group like having grown-ups in the biobank who are like safety monitors. These people who work at the biobank their job is to make sure that everything is done safely and properly. They are the biobank’s own team of rule-checkers who make sure the biobank is doing a good job taking care of the samples and information.

External Oversight Committee

External oversight is like having other grownups who don’t work at the biobank come and check on them. It’s like how a school inspector might come to a school and check even though they don’t work for the school.
Another way you can think these first two committees is like this: you have your parents (internal), and then you have your grandparents and friends (external), all making sure you’re being taken care of nicely. The biobank needs both types of helpers, internal and external, to make sure that it all runs smoothly and safely.

Material and Data Access Committee (MDAC)

Think of the MDAC like a special group of grown-ups who act as “gatekeepers” for the biobank. Just like how your parents decide who can come into your house or not. MDAC decides who can use the samples and the information stored in the biobank. When a scientist wants to use a sample (like blood or tissue) or information stored in the biobank, they can’t just take a sample: they have to ask the MDAC first. This is similar to how you have to ask permission if you want to borrow someone’s toy.

Patient Advocate Committee (PAC)

The PAC is a special group of people whose job is to be the voice of the patients (Figure 2). It’s very similar to having a group of caring grown-ups whose only job is to make sure that kids and families are always put first and are treated with kindness and respect.

Patient Engagement in Biobanking 

I think that it is crucial for kids and families to be involved in research for numerous reasons. The first reason is that the kids and even the families would learn new things, not only doctors and scientists. For example, the patient could learn more about the research and could get interested in these topics to get even more involved. The second reason to be involved is that they would gain trust in the biobank. Trust is important because people have to be able to put their samples and information in the biobank without worrying about bad things happening to them. Also, if the biobank or even any medical professional needs a favour from patients, then they are most likely to get a yes instead of a no from that family.

Reflections of the Author 

If you were asked to help run a biobank, what kind of decisions would you want to help with? 

If I had to help out with a biobank, some decisions I would make would be invest more money in futuristic research devices and hire more trained professionals to help out in every way that they can. I would also lead research in every way possible and look at every angle to get a better understanding of eye cancer. I would also train the team to their maximum potential.

Building Trust

Some things that would make me trust a research team are if they were happy, explained to me what they are doing, were interactive with patients, and were respectful and kind. All in all, those are the most important things I would want from a research team, and if they have those qualities, then it would be easy to trust them (Figure 3).

Conclusion 

In conclusion, the Kids Eye Biobank stores blood and tissue in liquid nitrogen freezers, but it does much more than just store them. It shares samples with scientists to run tests on the samples to learn more about eye cancer and to find ways to better understand and treat them.

The most important part is that biobanks are very helpful for research. Without biobanks, we would lose so much knowledge. Biobanks help us understand so many things we did not understand before, and all the research done through biobanks has advanced medicine and society so much. Now, with patients joining biobank teams, we can make even more breakthroughs in the years to come.

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“Cup of Boba” Journal Club September 2025

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 a discussion on the topic covered.

The next “Cup of Tea” journal club is a special teen edition: “Cup or Boba!” It will take place on Tuesday, September 16 at 8:00PM – 9:00PM Eastern Time. Our speakers will be Nikola Ristevski, Youth Survivor, and Helen Dimaras, Scientist and Director of Global Eye Health Research at SickKids Hospital. Together they will be discussing the article “Governance and public trust: a case study of the rare-pediatric eye cancer biobank” for which they have created 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, September 16, 2025, 8:00 PM ET

Duration: 60 minutes

Meeting Link: https://zoom.us/j/99375701933?pwd=fBa7UbbLluujatIsHytB4gafOEXDU1.1

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“Cup of Tea” Journal Club June 2025

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, June 17 at 8:00PM – 9:00PM Eastern Time. Our speakers will be Peninah Li, Parent, and Prakash Muthusami, Interventional Radiologist at SickKids Hospital. Together they will be discussing the article “Intra-arterial chemotherapy for unilateral advanced intraocular retinoblastoma: A long-term review of a case series” for which they have created 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, June 17, 2025, 8:00 PM ET

Duration: 60 minutes

Meeting Link: https://zoom.us/j/93638571765?pwd=qGHD86XfT3do5waeSrSX9smJ1eZJhf.1

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DEPICT Health: Digital Retinoblastoma Documentation

For over 50 years, research on retinoblastoma has shaped what we know about cancer and how to treat it. Dr. Brenda Gallie has played a key role in this journey, developing tools to improve care and communication for children with retinoblastoma worldwide.

We invite you to watch the videos linked in this post and join us on March 18 for a Cup of Tea event about DEPICT Health. This will be a great opportunity to learn more and ask questions. More details about the March Cup of Tea can be found here!

In the first video Brenda Gallie explains how Dr. Gallie explains how her team built DEPICT HEALTH, a new and improved system designed to support doctors, researchers, and families in providing the best care possible.

https://videocast.nih.gov/watch=55013

In the next video, Ella Bowles advocated for the use for DEPICT Health and her passion for the incorporation of it as part of regular RB care.

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“Cup of Tea” Journal Club March 2025

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, March 18 at 8:00PM – 9:00PM Eastern Time. Our speakers will be Cathy Johnson, Parent Advocate, and Breanda Gallie, Ophthalmologist at SickKids Hospital and Designer of DEPICT Health. Together they will be discussing the article “Digital Retinoblastoma Documentation Supports Care and Research” for which they have created a plain language article summary. You can email retinoblastoma.research@sickkids.ca for a copy if you cannot access through your institution.

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 18, 2025, 8:00 PM ET

Duration: 60 minutes

Topic: DEPICT Health

Meeting Link: https://zoom.us/j/96350571895?pwd=50QMijWn7gWADEEWXZUFATOFPp3qHu.1

If you missed our last “Cup of Tea” event on, “Trauma-focused to Support Caregivers of Children with Severe Illness: A Caregiver-Initiated Systematic Review”, led by BC Pomeroy and Lindsay Jibb, you can watch the recording or listen to the podcast version now.

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“Cup of Tea” Journal Club December 2024

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, December 17 at 8:00PM – 9:00PM Eastern Time. Our speakers will be BC Pomeroy, Patient and Public Engagement Specialist as well as a researcher with lived experience, and Lindsay Jibb, Scientist at the SickKids Research Institute and Assistant Professor at the University of Toronto’s Lawrence Bloomberg Faculty of Nursing. Together they will be discussing the article “Trauma-focused to Support Caregivers of Children with Severe Illness: A Caregiver-Initiated Systematic Review” for which they have created a plain language article summary. You can read the pre-published article below or email retinoblastoma.research@sickkids.ca for a copy. Please do not copy or share this article.

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 17, 2024, 8:00 PM ET

Duration: 60 minutes

Topic: Support for Caregivers

Meeting Link: https://zoom.us/j/98184775296?pwd=NjdoVG1MWTY3MG5VMHVEaU5ZbTVZUT09

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Vision Loss Rehabilitation Canada: Tailored Support for Families Affected…

Written by: Ivana Ristevski and Sue Marsh-Woods

Vision Loss Rehabilitation Canada (VLRC) is a non-profit, national healthcare organization dedicated to helping people who have low or no vision. They offer a range of services, including training, tools, and resources, to assist individuals in adapting to vision loss and maintaining their independence.

Tailored Support for Children with Retinoblastoma

VLRC understands that the needs of each child with retinoblastoma are unique. Whether a child has partial sight or has lost their vision entirely, VLRC tailors its services to meet the specific needs of each family. This includes helping families monitor their child’s development when vision is affected or absent. VLRC provides practical skills and strategies that empower children to thrive in everyday activities.

Comprehensive Rehabilitation Services

For children and adults affected by vision impairment due to retinoblastoma, VLRC offers orientation and mobility training, as well as assistive technology to help individuals maintain their independence and improve their quality of life. VLRC also addresses the specific challenges of monocular vision (vision in only one eye), offering mobility training, techniques to enhance spatial awareness, and assistive devices to help manage daily tasks.

Getting Started with VLRC

Families interested in VLRC’s services are encouraged to reach out directly for a one-on-one consultation and develop a personalized plan. Accessing VLRC’s services is easy.  All you need to do is visit their official website (visionlossrehab.ca) to fill out a brief online referral form or ask for a referral from a healthcare provider. For more information, you can call them at 1-844-887-8572.

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“Cup of Tea” Journal Club September 2024

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 a discussion on the topic covered.

The next “Cup of Tea” journal club will take place on Tuesday, September 17 at 8:00PM – 9:00PM Eastern Time. Our speakers will be Charles Campbell, parent of a retinoblastoma child, and Atul Jaiswal, PhD researcher and adjunct assistant professor at Queen’s University. Together they will be discussing the article “A scoping review of vision rehabilitation services in Canada” for which they have created 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. If you cannot access the original article, please contact us at retinoblastoma.research@sickkids.ca.

In order to stay up to date on events such as this one, join the RB Research Community.

Event Details

Time: Tuesday, September 17, 2024, 8:00 PM ET

Duration: 60 minutes

Topic: Impact of RB on Daily Living

Meeting Link: 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. If you cannot access the original article, please contact us at retinoblastoma.research@sickkids.ca.

In order to stay up to date on events such as this one, join the RB Research Community.

If you missed our last “Cup of Tea” event on, Applications of three-dimensional printing in ophthalmology, led by Mark Scanlon and Noha Soliman, you can watch the recording or listen to the podcast version now.

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Increasing Awareness of Retinoblastoma Among Pediatricians and Family Doctors…

Mallipatna Lab

Dr. Ashwin Mallipatna is a distinguished pediatric ophthalmologist at The Hospital for Sick Children (SickKids) in Toronto. Specializing in retinoblastoma, Dr. Mallipatna is dedicated to advancing the diagnosis, treatment, and management of this and other pediatric eye conditions. His work at SickKids includes leading innovative clinical research and participating in multi-disciplinary collaborations to develop new treatment protocols and improve patient outcomes. Dr. Mallipatna is also at the forefront of educational initiatives, working on developing 3D printed eye models to educate pediatricians and family doctors about retinoblastoma. Through his extensive clinical expertise, research endeavors, and educational contributions, Dr. Mallipatna plays a pivotal role in shaping the future of pediatric ophthalmology.

3D Printing for Retinoblastoma Education

3D printing technology is revolutionizing the field of ophthalmology, particularly in the treatment of retinoblastoma. At SickKids Hospital in Toronto, the research team is leveraging this technology to create anatomically accurate and optically functional 3D models of the eye. These 3D-printed models can play a crucial role in educating healthcare professionals, including pediatricians and family doctors, on identifying abnormal eye reflexes and other conditions such as retinoblastoma. Additionally, the models assist in planning and training for complex treatments like enucleation and laser treatment for retinoblastoma.

The use of 3D-printed models offers significant benefits in medical education and training. These models provide a much more detailed and accurate representation of eye anatomy and abnormalities compared to traditional 2D images or diagrams. This enhanced visualization helps healthcare professionals develop a deeper understanding of various ophthalmological conditions and how to properly identify them. By using these models, surgeons and other medical professionals can better plan and practice procedures, which improves surgical outcomes and reduces risks for patients.

Moreover, 3D-printed models are more accessible and can be easily distributed, increasing the reach of educational materials. This helps raise awareness and knowledge about ophthalmological conditions among a wider range of medical practitioners. The ability to replicate these models ensures that more healthcare providers can benefit from this advanced training tool, ultimately leading to better patient care and outcomes.

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