Many people agree that research is vital to changing the future for childhood cancer. But did you know that a lot of research can’t happen without actual cancer samples?
In 1998, Children’s Cancer and Leukaemia Group set up the CCLG Tissue Bank, now part of the brand new VIVO biobank. The goal was to collect as many tumour samples from childhood cancer as possible, from DNA to frozen pieces of tumours. The CCLG Tissue Bank quickly became the UK’s largest collection of solid tumour samples from childhood cancer patients. Now, you might be asking – what is the point of collecting these samples?
Why is tissue banking needed?
Professor Deb Tweddle is the Director of the VIVO biobank and a top neuroblastoma researcher. She said that we are now reaching 25 years of biobanking for children’s cancer: "During the past 25 years, research from banked samples has ranged from developing new tests to diagnose childhood cancers, new ways to measure treatment response or outcome, and new ways of classifying the cancer risk group which then determines how a patient with that cancer is treated. This has all led to a better understanding of tumour biology, leading to the development of new treatments for children and young people’s cancer."
Professor Deb Tweddle
Although childhood cancer is more common than you might think, the number of cases of each cancer type per year can be very low. For example, in 2021 there were only 91 cases of kidney cancer in children under the age of 15. Those 91 cases can then be broken down by tumour type, such as Wilms tumour or clear cell sarcoma. Then it goes further - research is often conducted into specific subtypes of cancers, for example MYCN-driven Wilms tumour (find out more about this in How do researchers use cell models to target cancer?).
By the time researchers have defined all of the criteria for what they are researching, there may only be a few children with that specific type of cancer going through treatment. This can make it difficult to have enough material to conduct the research properly – in other words, difficult to have a big enough sample size.
What is sample size?
Sample size is a very important factor in research. In this case, it refers to the number of children’s samples involved in a project. Having more samples makes it easier to make an accurate conclusion about your research.
Here’s some examples. Let’s say you are testing whether a new medicine kills Wilms tumour cells.
If you only have two Wilms tumour cells, and they both respond differently to the new medicine, how do you know which one is ‘normal’ and representative of other Wilms tumours?
But if you had 200 samples, and only one didn’t respond to the medicine, you could be a lot more confident that you had found a useful medicine to treat children with cancer.
What if there are more than two responses to the new medicine?
It’s likely that there are varying amounts of cells with each type of response.
If you only take a small sample, you might capture all of the common responses, but you might miss a cell with a rare response to the medicine.
Sometimes this might not be too important – but what if the cell responded in a way that could make a child’s cancer worse?
Storing cancer tissue, blood, or bone marrow from a child’s biopsy helps to increase the number of samples available to researchers. This can help support better quality research and allow it to be conducted sooner as researchers don’t need to wait to find enough children with that cancer type. Tissue banks can store samples indefinitely, and research has shown that frozen samples can still be useful over eight years after being stored.
Deb said:
I would absolutely encourage parents and families to talk to their doctors about banking cancer samples, in the knowledge that by donating their child’s sample to research today they may be able to help another child with the same type of cancer tomorrow.
She added: “Most families want some good to come out of the unfortunate situation in which they find themselves and by donating their child’s sample or the young person’s sample to the VIVO biobank, we can assure them that it will be used for world class research to help develop new and kinder treatments for children with cancer.”
Does it mean extra tests for patients?
When a child is diagnosed with cancer, there are a lot of tests and procedures involved. Often, doctors request a biopsy. This is a small sample of a tumour, or a blood/bone marrow test for non-solid cancers like leukaemia, which can help doctors learn more about what cancer their patient has and how best to treat it.
After the necessary tests, there is often some of the sample left over. At this point, doctors can ask whether they have consent to store the cancer sample so that researchers can access it for their projects. Researchers from all over the world can request these samples, and it’s not unusual for researchers to request samples from other countries.
The samples are stored alongside details about the child’s diagnosis and treatment, but no names or personal details are held. Parents and patients are in charge of their samples though – they always have the option to withdraw their consent.
A united future
In 2022, the CCLG Tissue Bank, which collected samples of solid tumours, merged with the Leukaemia Cell Bank, which collects liquid samples like blood and bone marrow, to form the new VIVO biobank, funded by Cancer Research UK and Blood Cancer UK.
Deb said: “Bringing together the CCLG tissue bank and the leukaemia CellBank to form the VIVO biobank is pivotal to showing our unified approach to biobanking, which we think is key to finding cures for children’s and young people’s cancer.”
She added:
Together, we can ensure that the new bank follows the best practices for biobanking, whether a solid tumour or leukaemia sample, and create a single point of access for researchers.
This has created one shared location for all children, teenage and young adult cancer tissue samples used in research. One of their goals is to raise awareness of biobanking and to increase the amount of teenage and young adult samples stored, as this is a notoriously under researched area.
Deb said: “Perhaps our most exciting aim is to capitalise on the genomics revolution that is happening for children and young people with cancer.
"Currently, all children and young people in England have access to whole genome sequencing of their tumour through the NHS. We are planning to enable links between this genomic data and the samples stored at the VIVO biobank, so that researchers can apply to access the data and compare it to their research.
"This is something that is not yet possible in any other country in the world and, through additional links with cancer registries for clinical data, puts the UK at the forefront of children’s and young people’s cancer research internationally.”
Find out more about VIVO biobank, or learn more about storing samples.
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters. You can find Ellie on X: @EllieW_CCLG
