Sharing and Caring: How Patients Helped Build a Biobank for Rare Eye Cancer

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

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.

Long-term evaluation of outcomes and survival of patients treated for retinoblastoma

Purpose of the Study

The purpose of this study, by a group in Poland, was to take a retrospective look at 42 patients (58 eyes) who had been treated for retinoblastoma. They described the three goals of treatment as first of all survival of the patient, secondly saving eyes and finally preserving vision. They reviewed the effectiveness of treatment based on survival rate, visual acuity, preservation of the affected eyeball, and tumor reactivation inside and outside of the eye, after initial treatment.

Summary of the Study

The researchers studied outcomes from patients who were diagnosed between 1997 and 2012. All of the patients had been treated at the Department of Ophthalmology and Ocular Oncology at University Hospital Krakow, Poland. The Reese-Ellsworth (RE) Classification for intraocular retinoblastoma, at diagnosis, ranged from I to V. All had received standard chemotherapy drugs vincristine, etoposide and carboplatin (VEC Protocol) as well as other local treatments. Some were bilaterally affected and some unilaterally and there was a mix of males and females.

In information collected from 1997 to 2019, the researchers looked at the types of local treatment the patients received as well as the spread of the disease.

Conclusions from the Study

Early diagnosis and treatment with chemotherapy is very effective in saving lives, eyes and visual acuity. Of the 42 patients, only 1 patient died. The earlier a patient was diagnosed, the more effective chemotherapy was when used with local treatments, there was a much better chance of saving eyes and vision. Even patients with an RE Classification of V had a good survival rate, although eyes were more likely to be enucleated and there was more vision loss. In all cases it was important to have regular examinations and treatment. The one patient who did not survive died because of the spread of disease outside of the eye after initial enucleation. There is no indication that pathology was done after enucleation to check for spread outside the eye and to determine if chemotherapy treatment should be changed.

Personal Comment

This article emphasizes the need for early diagnosis and treatment but also gives hope that even a later diagnosis can save life and vision. The information is not new but it may be the first time the group in Poland has studied their own patients. The RE Classification system for tumors has been replaced by IPC and TNM classification in many centres now. These other classifications take into account more than just the size of the primary tumour.

It is encouraging to know that chemotherapy in conjunction with other local treatments continues to be effective in aiding survival, saving eyes and preserving vision. It also reinforces the need for skilled physicians in understanding the treatment of retinoblastoma.

The top 10 retinoblastoma research priorities in Canada as determined by patients, clinicians and researchers: a patient-oriented priority-setting partnership

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