Biobanking is the process of collecting, storing and processing biological samples for the purpose of research. A biobank is a secure facility that stores these samples. In the case of children’s and young people’s cancer, these may be pieces of tumours or leftover blood or bone marrow samples from hospital tests. Researchers can request these samples to help them learn more about the biology of children’s and young people’s cancer, which is fundamental to understanding the causes of it, how to develop new treatments, and how, potentially in the future, to maybe even prevent it developing in the first place.
What is the VIVO Biobank?
It’s a new children’s and young people’s cancer biobank, funded by Cancer Research UK and Blood Cancer UK. It was formed from a merger of two very well-established biobanks: the CCLG Tissue Bank, which began in 1998, and the Leukaemia Cell Bank, which began in 2005. It was decided in 2021 for the two to join up, to improve practice for both banks in terms of accessing samples, storing samples, and regulation and governance, but also so that the medical staff that were asking patients and families for consent only needed to use one form for both solid tumour and leukaemia samples. Solid tumour samples are transferred from centres to the Newcastle University central biobank and liquid samples to the UK Biocentre in Milton Keynes.
Having a unified, single resource of cancer samples from children and young people allows better collaboration and dissemination of research. As a larger biobank, this allows us greater visibility in the research community, so more researchers can use the samples that we store. It allows for a much wider scope of research to be done, that could hopefully result in better outcomes in the future.
How has biobanking contributed to the progress in children’s and young people’s cancer research?
During the past 25 years, research from banked samples has ranged from developing new tests to diagnose cancers, new ways to measure treatment response or outcomes, 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.
What do patients and families have to do to donate their samples?
It’s a really simple process. Patients and families are approached in their treatment centre and asked about donating a sample to the biobank. The initial approach for consent is almost always made by research nurses, though it can sometimes be the child’s or young person’s doctor. Patients/families are provided with detailed information sheets and consent forms, and usually given at least a couple of days to look at them, sometimes longer. Then, when they’re ready, the research nurse will go through everything with them. After the consent forms are signed, we’ll register samples that have either already been taken, or take additional samples if it’s been agreed to them being taken for the purpose of research.
All children’s cancer principal treatment centres are banking centres and we’ve now expanded into teenage and young adult centres as well. It’s been a real strength of our new merger that we’ve been able to do this.
What is ‘deferred consent’?
It’s something we sometimes do at the point of diagnosis, when it can be very overwhelming for families/patients, and difficult to process lots of information. So, we may take the samples at diagnosis but return for consent within a period of eight weeks. For example, if a patient’s having a bone marrow sample, you only get one chance to take it, so the sample is taken, and then gets stored and flagged as awaiting consent. Then, there are eight weeks in which the research nurses or consultant can approach the family to ask if it’s okay to donate the sample. It almost always is, and the samples remain in the bank, but on the occasions consent isn’t obtained for various reasons, then we would need to destroy those samples.
What if someone agrees and then changes their mind?
Samples are kept indefinitely and available for research, as long as we are a registered tissue bank, and we have a Human Tissue Authority license to store samples. However, you can ask us for the samples to be removed from the bank at any time, as long as they’ve not already been used for research. You can do this by contacting your treatment centre who’ll then notify the bank, and the samples will then be destroyed.
Can you only donate samples at diagnosis?
Most patients donate at the point of diagnosis, but not always. For example, if a patient’s tumour relapses, they can donate that sample, even if they’ve not donated their first sample, though we’d probably ask them if they want to donate that as well, if it’s still stored somewhere. Patients can choose to donate their samples, particularly from solid tumours, any time after diagnosis, so they don’t have to choose to donate their sample immediately. We have samples come into the biobank from patients diagnosed years before, where maybe they weren’t informed about the biobank at the time they were diagnosed, but later on, when they met with a consultant, they may have learned about it. There’s quite a lot of flexibility in when patients can donate their samples, and it’s not necessarily tied to diagnosis.
What kind of samples are stored?
Mainly samples of tumour, blood, bone marrow, cerebrospinal fluid and urine are stored. We have over 200,000 samples, with about 50% being leukaemia. We also have samples from most solid tumours occurring in children and young people including central nervous system tumours, renal tumours, lymphomas, neuroblastomas, as well as cancers like retinoblastomas, germ cell tumours and tumours of the liver.
Who can access the samples?
Any researcher, in the UK or internationally, can access samples, if they obtain permission from our Sample and Data Access Committee. This committee, made up of scientific and medical experts, and those with experience of children’s and young people’s cancer, reviews the researcher’s application, which details what kind of sample they need, what they’re going to use it for, and how their research will impact the field of science. They also review if the research is feasible, being undertaken by a reputable research group, and if there’s enough funding for it.
Can they tell who they’re from?
The researcher won’t know who the samples are from. They’ll know what type of tumour it is, and some basic clinical information like whether the patient’s male or female, their age, tumour type and stage and whether the sample was taken at diagnosis, during or after treatment, or relapse, but any identifying information is all held securely within the biobank.
What safeguards are in place?
All samples go out with a VIVO Biobank identifier rather than any patient information and that ensures that the samples aren’t identifiable to the researchers. Information on those samples and the data on the patient, including sensitive data such as the patient’s NHS number and their date of birth, is stored securely on a database at the University of York that’s only accessible to a few people at the biobank and through a secure password. We have strict protocols on how that data is stored, how it’s accessed and how it’s managed.
How can people be involved further with the VIVO biobank, other than by donating samples?
There are opportunities to join our patient and public involvement (PPI) group, and we’d love to hear from people that would like to take on more of an involvement if they find biobanking particularly interesting. The PPI groups are led by Dr Bethan Lloyd-Lewis, one of our co-investigators and a survivor of childhood cancer. She’s recruited 15 members, who are involved in all aspects of biobanking.
Members attend various committee meetings and are involved in helping put our application through ethics, and reviewing our patient information sheets and consent forms. They also come to our education events to talk about their experiences and why contributing to biobanking to try and help other young people with cancer in the future is important to them.
More information about our PPI group can be found on our website.
From Contact magazine issue 105 | Winter 2024
