Meet the GOSH brain tumour trials team

Diagnosis with a brain tumour can bring family life to a standstill in the worst possible way. But it also sparks an immediate flurry of activity, as a multi-disciplinary GOSH team springs into action around the child and their family. From radiology and genetics to nursing and psychology, these experts provide support and care at every stage of the child’s journey, as well as supporting vital research to find new treatments and cures. We found out more from three members of the expert brain tumour clinical trials team.

“I work with children, young adults and families who are facing diagnosis with tumours in the brain or nervous system. I analyse their test results and together, we make decisions about the best treatment option for them. As part of a team led by Professor Darren Hargrave, I also carry out research to develop new treatments for some these cancers.

“It’s a unique role that only works because GOSH’s ambition is to be a true research hospital – that is, embedding research in everything we do. I benefit from having a multidisciplinary team who help me to bring the patient and their family through their journey.

“I got into medical science because I am fascinated with the concept that cancer cells have ‘normal cells’ as ancestors. By looking at how the cancer cells have changed, there are opportunities to target the abnormal signals with drug treatments.

“I’m really enthusiastic about translating ideas and lab work into meaningful treatment options for children and their families. It’s important for me that we keep looking for treatments that are not only more successful but less toxic, because our patients tell us that the side effects of treatment can be really difficult to deal with.

“The drugs we’re developing are targeted, in that they block pathways or signals which have become ‘overactive’ in the cancer cell. Those signals cause the cancer cells to grow and replicate out of control. Targeted treatments like this could have less side effects than treatments like standard chemotherapy and be more tolerable in the longer term."

“Choosing Pharmacy led from enjoying chemistry and sciences at school. A series of career choices led me here to GOSH and to children’s cancer services. In the last 20-plus years, I’ve been part of many families’ journeys and seen so much change. I feel proud to be part of that learning, that progress, and now research. Striving for future change continues to drive me. I often get asked whether I would change my career choices – I’m quick to reply, no!

“My team’s role is carefully preparing and dispensing the drugs used in these clinical trials for brain tumours. We look at what medicines each child will be taking, in what form, and ensure any dilution or doses are accurate.

“We label up the drugs and make sure all the information is there for families, so they know how the drugs are given and what to avoid or watch out for, like whether the child needs to fast before and afterwards. We also help with feeding back to drug companies, reporting any new side effects that children are experiencing.

“Our role is vital in making sure trials are run safely and with specific protocols, so that the results give a true picture of whether the drugs are effective.”

“I became GOSH’s first cancer research nurse in 2000. Since then, the team supporting the delivery of clinical cancer research at GOSH has expanded massively. I’ve gone from being the only research nurse in the department, to leading the team and more recently, moving into the hospital’s first Advanced Research Nurse Practitioner role for childhood cancer clinical trials.

“Research nurses play a crucial role in supporting the safe delivery of experimental therapies to patients. For some of the newer, targeted therapies, children might need to remain on a clinical trial for a significant period of time. While that can be positive, it can really increase the burden on families. Along with my colleagues, we offer support and guidance for families through what can often be a very challenging and uncertain period.

“My new role, Advanced Research Nurse Practitioner, is really unique and exciting. I work closely with the consultants and research fellows to provide specialist advice, leadership and education on the range of cancer research studies we run. The most rewarding part of my role is undertaking clinical reviews of patients enrolled onto clinical trials, because it allows me to build relationships with families while assessing how the child is getting on with the new treatment. I’m responsible for monitoring, assessing and managing any side effects the patients have, talking to families about results and ensuring data required for the trial is recorded and reported accurately.

“I feel very privileged to have had the opportunity to play a key role in delivering research within the cancer service at GOSH over the past 20 years. Research is key to ensuring we make advances in childhood cancer treatments, with our ambition being that every child has the opportunity to benefit from new therapies. Children and young people who are eligible for these trials have generally exhausted all other treatment options, so it’s vital that we do everything in our power to ensure new treatments are developed as quickly and safely as possible."

Research at GOSH is underpinned by support from the National Institute of Health Research (NIHR) Great Ormond Street Hospital Biomedical Research Centre (BRC) and GOSH Charity.