April is Teenage and Young Adult Awareness Month, and we’re shining a light on the unique challenges faced by teenagers and young adults with cancer.

We know that teenage and young adult cancers are biologically different to cancers in other age groups. The more researchers can study those differences, the more they can do to develop new treatments that help teenagers and young adults recover without long-term side effects.

But gathering enough cancer samples to do those studies is challenging. There are at least 88 different subtypes of young people’s cancers, and only a very small number of young people – spread across adult wards and children’s hospitals – are affected by each cancer type at one time. Without help, researchers wouldn’t be able to find everything they need.

That’s where VIVO Biobank, and the young people who generously contribute to it, come in. Funded by Cancer Research UK for Children & Young People and Blood Cancer UK, VIVO Biobank is the UK’s biggest resource for storing and studying samples of cancers in children and young people up to the age of 25, making the very best research into these cancers possible.

The teenage and young adult patients who choose to donate their samples to the Biobank are doing something extraordinary. Their generosity, at one of the hardest times of their lives, powers lifesaving and life-improving research that wouldn’t be possible any other way.

In this article, we’re finding out why that’s so important, and what it feels like to play a part.

Cory, VIVO and clinical trials

In total, VIVO Biobank contains more than 200,000 samples from children and young people with cancer. Deep in its libraries of fridges and freezers are the ones that came from Cory.

Cory was diagnosed with Ewing sarcoma, a type of cancer that starts in and around the bones, when he was 20 years old. He was treated through the Euro Ewing 2012 trial, which helped him live eight years after his diagnosis, but, very sadly, Cory died in 2024.

“Cory knew all about the Biobank,” says his mum, Debra. “He was always so enthusiastic and happy to be part of research and to raise awareness.”

Euro Ewing 2012 helped doctors find a better combination of chemotherapy drugs for treating Ewing sarcoma, but, as Cory’s story shows, we still need other options. Cory’s biobanked samples can help researchers find them.

“A trial might ask a set of important questions that could help improve treatments,” explains Dr John Moppett, the Associate Director of VIVO Biobank, “but it’s limited. There’s much more you can answer if you share the samples afterwards. That’s why the VIVO model is so good. It doesn’t matter who comes up with the answers; it’s that the answers are found.”

And Euro Ewing 2012 is far from the only trial linked to VIVO. One of the Biobank’s biggest successes is the way the team have been able to integrate it into the research landscape across the UK, including by storing samples from Cancer Research UK-funded trials into Ewing sarcoma (INTER-EWING-1), rhabdomyosarcoma, which starts in muscle cells, (FaR-RMS), and the blood cancer leukaemia (ALLTogether-1 and MyeChild01).

Aleesha-Marie’s story and what a sample can do

Aleesha-Marie decided to take part in the MyeChild 01 trial after she was diagnosed with acute myeloid leukaemia (AML) in October 2019. As her mum, Emma, told us in 2024, one of the most important parts of the trial came right at the start, when doctors took a sample of Aleesha-Marie’s cancer cells.

That sample showed that Aleesha-Marie’s AML would be likely to come back unless she had a stem cell (or bone marrow) transplant after her chemotherapy.

“Without the trial, Aleesha-Marie would not have had her transplant so early, and her outcome most definitely would have been very different,” said Emma.

Aleesha-Marie is now cancer-free, and she’s training to become a paediatric nurse.

“My cancer experience and being part of a research trial shaped my decision,” she says. “I admired the nurses who looked after me and want to give back.”

By using advanced technologies to study the cells in Myechild01 samples one by one, the researchers behind the new project think they can find gentler and more targeted ways to remove leukaemia stem cells without damaging healthy ones. In particular, they’re looking for tiny molecules on the surface of leukaemia stem cells that they can teach the body’s defences (the immune system) to track down.

“I hope this research can one day lead to a cure and advanced treatments with better outcomes for patients and families,” says Aleesha-Marie. “Cancer research is so important to me, and I like the idea that my part in the trial can help others whose journey started after mine.”

Biobanking beyond the UK

For Moppett, who specialises in leukaemia, the link between samples donated by people like Aleesha-Marie and recent improvements in leukaemia treatment couldn’t be clearer. Without them, researchers couldn’t have carried out the translational research needed to turn lab discoveries about how leukaemia works into tools that can help stop it.

“Honestly, I struggle to find translational research into childhood and young adult leukaemia in the UK that has not involved VIVO,” he says. “The patients who biobank support the entirety of the research output into their disease. You can draw a line between their donations and the improvements in outcomes and survival.”

Moppett is also the lead investigator for ALLTogether-1, an international trial into acute lymphoblastic leukaemia (ALL). ALLTogether-1 is recruiting up to 8,000 under-30s to test more personalised treatment approaches. And, as Moppett explains, the fact the trial is connected to the biobanks in all 14 countries taking part means it can support an entire research “ecosystem”.

“We join everything up, so future research can look at all the patients, and even really rare subsets which we wouldn’t be able to study if we only worked in the UK.”

VIVO Biobank doesn’t share any identifying information about the children and young people who donate to it, but one of the biggest advantages of working with samples taken during clinical trials is that they come with a wider “story”.

“You can do research on samples on their own, but many of the most important questions relate to the clinical story of the person who gave the sample,” says Moppett. “With that clinical picture, it’s not only ‘Did they do well or not?’, but ‘What treatment did they get that meant they did well?’, or ‘What side effects did they experience?’”

Biobanking beyond clinical trials

Those questions are vital for teenagers and young adults, whose developing bodies can be more sensitive to treatment. Even so, clinical trials can only ever fill in part of the picture. Some young people aren’t eligible for trials, and joining one is always a personal choice.

“It’s hugely beneficial to have trial-associated collections, but at least in the cancer I deal with, only half of children can join a clinical trial,” Tweddle explains. “So, we still want to collect samples from patients that aren’t on clinical trials and ask the same research questions.”

Tweddle specialises in neuroblastoma, a type of nerve cell cancer. It usually affects very young children, but in rare cases it can come back in teenagers and young adults. Biobanking helps make sure these people don’t get left behind.

“We ask patients whether they would like to re-consent to the Biobank when they turn 16, and many of them willingly donate their tissue again,” Tweddle says. “That helps us understand the biology of these cancers so we can work out why they come back. It’s just as important as working with samples from when patients were first diagnosed, and we would never be able to do it if not for the Biobank and the young people agreeing to take part.”

Some clinical trials also have age limits that can stop teenagers and young adults from joining. At Cancer Research UK, we’re leading the way in removing unnecessary age limits, but the fact they exist makes the samples collected through VIVO Biobank even more important. Thanks to the Biobank, researchers can ask the important questions about teenage and young adult cancers that trials have missed.

Research for everyone

All children and young people who are diagnosed with cancer in the UK can donate samples to VIVO Biobank, either through a clinical trial or as part of their standard cancer care.

“Everyone we speak to finds it really valuable to have donated,” says Moppett.

“We have a very vibrant patient involvement group within VIVO, a mixture of children’s cancer survivors and parents of teenagers and young adults, and they’re very vocal about the positive effect of biobanking,” adds Tweddle.

Based on the advice of these patients and parents, VIVO Biobank’s ethics committee has decided that children, young people and their families should have extra time to decide whether they want to share samples. This ‘deferred consent window’ means that the Biobank can store samples taken during routine procedures for up to eight weeks before families make their decision. The samples are then either processed and stored for research or safely discarded.

“Patients and parents have made it clear that we shouldn’t miss opportunities to let people contribute,” says Moppett.

All Cancer Research UK for Children & Young People’s work is made possible by contributions like that. People give what they can to make a difference, whether that’s money, time, energy, or tiny bits of themselves. It all helps drive forward progress to ensure more children and young people can live longer, better lives, free from the fear of cancer.

If you or a member of your family are interested in contributing to VIVO Biobank, speak to a member of your treatment team. You can also find out more about VIVO Biobank on its website.