A new charity report has revealed major gaps in childhood cancer research funding despite strong investment in treatment development.
The report, titled ‘Mapping Funding of UK Childhood Cancer Research’, was funded by CCLG: The Children & Young People’s Cancer Association to investigate whether UK childhood cancer research funded between 2020 and 2025 aligns with the top research priorities identified by the James Lind Alliance Childhood Cancer Priority Setting Partnership. These priorities reflect what matters most to children with cancer, their families, survivors and professionals - ranging from the development of kinder treatments to improvements in emotional support and inpatient care.
The analysis, led by researchers at the University of Surrey, compared £112.9 million of UK childhood cancer research funding with the top 23 research priorities.
Ashley Ball-Gamble, Chief Executive of CCLG, said: “Identifying the top research priorities was an essential step forward for the childhood cancer field. It means we know exactly what needs to change and what matters most to our families, survivors, and professionals.
“But these priorities can only make a difference if we act on them. We funded this research to understand which priorities are being supported and which are being overlooked. We believe every priority requires urgent attention, and we hope this report will help funders plug the research gaps.”
Alexandra Brownsdon, lived experience representative on the project and survivor of childhood cancer, said: “It is good to see the views and opinions of those directly affected by childhood cancer having an influence on the direction of future research, with the potential of making a real difference to the lived experience and long-term outcomes for young people.”
The research showed that there is a strong commitment to improving treatment, with £94.2 million spent on the top James Lind Alliance priority of developing kinder and more effective treatments. Priority number two – investigating why children develop cancer – was also well funded, with £16.6 million spent.
Susie Aldiss, lead researcher at the University of Surrey, said: “It's positive that research is focused on the two priorities that were identified as most important overall in the Priority Setting Partnership.
“The top priority of improving and finding new treatments, is obviously really important for survival, and to help children with cancer live with fewer long-term effects and fewer awful side effects while on treatment. And then, priority two asks why children get cancer and whether it can be prevented - if we can work that out, then that would have a huge impact.”
The report also revealed that five priorities received no dedicated funding at all, including the top priority identified by children – improving their experiences in hospital. Psychosocial research can directly improve quality of life, yet it remains critically underfunded.
Susie said: “When you think of all the different things that could be encompassed in making being in hospital a better experience for children and young people, to find no research focusing on that was really disappointing.”
Having experienced the difficulties of living through childhood cancer herself, Alexandra hopes that the report “will help alert researchers and policymakers to the priority areas that are currently underfunded” – helping ensure future research funding addresses the unanswered research questions for children with cancer.
Susie added: “At the moment, everyone's mostly funding the same thing – 29 out of the 30 research strategies we looked at say that they'll fund research on treatments.
“Very few funders are explicitly saying that they'll fund research into the psychological and social aspects of having cancer. If we're going to move the field forward and create meaningful change for children with cancer and their families, there needs to be bigger investment in those priorities too.”
The full report is available on the CCLG website: www.cclg.org.uk/mapping-funding-childhood-cancer-research-priorities
Find out more about CCLG: The Children & Young People's Cancer Association here.
If you would like further information, please contact our team at media@cclg.org.uk.
