In 2022, we shared the 23 top priorities in childhood cancer research - a James Lind Alliance (JLA) Children’s Cancer Priority Setting Partnership (PSP) built on years of research and consultation with children, families, survivors affected by childhood cancer. Children shared what was most important to them, and professionals shared the often heart-breaking everyday challenges they see in the clinic.
The priorities are intended to drive action, inspiring impactful research into underfunded areas. Those with lived experience have told us what matters to them - we must listen and act. Three years later, our new report asks: Are we funding the research that answers those priorities?
- Can we find effective and kinder (less burdensome, more tolerable, with fewer short and long-term effects) treatments for children with cancer, including relapsed cancer?
- Why do children develop cancer (including the role that genetics plays) and could it be prevented?*
- Are the psychological, practical and financial support needs of children with cancer, survivors and their families being met during treatment and beyond? How can access to this support be improved and what further support would they like?†
- How can we speed up the process of getting diagnosed and starting treatment in the right place?*
- Why do children relapse, how can it be prevented and what are the best ways to identify relapse earlier?
- How can we make being in hospital a better experience for children and young people? (like having better food, internet, toys and open visiting so other family members can be more involved in the child’s care)*
- What are the best ways to ensure children and families get and understand the information they need, in order to make informed decisions, around the time of diagnosis, during treatment, at the end of treatment and after treatment has finished?
- What impact does cancer and treatment have on the lives of children and families after treatment, and in the long term; what are the best ways to help them to overcome these impacts to thrive and not just survive?
- How can we make more accessible treatments that are closer to home, in shared care hospitals?*
- What is the relationship between chronic fatigue syndrome, fibromyalgia, chronic pain and treatment for childhood cancer? (Fibromyalgia is a long-term condition that causes pain all over the body.)
- What are the best ways to provide emotional support for children and their families (1) around the time of diagnosis, (2) during treatment and (3) after treatment (including survivors who are now adults)?*
- What are the best ways to reduce, predict and manage the side effects of treatment for children (including life-threatening side effects)?
- How can transition (moving) from child into adult services be improved for young people who had cancer as a child?
- What is the psychological and social impact of cancer and treatment on children and their families during treatment and in the long term; what factors affect these impacts?
- How common are the different long-term effects of childhood cancer treatment, how do they change across the lifespan, can we predict them and how can they best be prevented, detected and/or treated?
- What are the best ways to support the emotional well-being of professionals who care for children with cancer and their families?
- During and after treatment, what issues prevent or encourage physical activity, which interventions are most effective and what should be measured to assess effectiveness?
- What are the best ways of making sure people who had cancer as a child receive the information they need about the long-term effects of cancer and treatment?
- What fertility preservation options work best for children and teenagers with cancer?
- What are the long-term effects of additional medications children with cancer may receive (such as antibiotics, pain killers, laxatives) and how can these effects be reduced?
- What are children’s and survivors’ experiences of the side effects and long-term effects of cancer treatment?
- How can experiences of having a Hickman line be improved for children with cancer? (A Hickman line is a small tube which is inserted into a vein so that treatments can be given, and blood taken without the repeated need to access veins with a needle. The Hickman line can stay in place for several months.)
- What are the best ways to support children as they get older, and their needs change, to understand and take responsibility for their health, and to live with the long-term effects of cancer and treatment?
Mapping funding of UK childhood cancer research
This mapping study evaluates how UK childhood cancer research funding aligns with the 23 priorities identified by the JLA PSP and covers research funded between January 2020 and July 2025 by 30 organisations.
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452childhood cancer research projects found.
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£ 112.9 millionspent on childhood cancer research.
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83 %of funding was spent on developing kinder and more effective treatments.
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5of the top 23 priorities received no funding at all.
What did we find?
The findings show that while treatment research is well supported, areas that also matter to children and families – such as emotional support and hospital experience – are being overlooked. This information can help funders, researchers, and policymakers target future funding to fill these gaps.
There were four key areas investigated:
Three research strategies explicitly aligned with the 23 JLA priorities.
Most mentioned priorities:
- Priority 1 (effective and kinder treatments): 29 mentions
- Priority 2 (why children develop cancer): 19 mentions
Nine priorities – including three in the PSP Top 10 – are not referenced.
Total Studies: 452 (56% completed, 44% ongoing)
Total Funding: £112.9 million
Most funded priority:
- Priority 1 (effective and kinder treatments): 365 studies, £94.2 million
Other highly addressed priorities:
- Priority 2 (why children develop cancer): 73 studies, £16.6 million
- Priority 5 (relapse): 44 studies, £9.6 million
Underfunded or unaddressed priorities - five priorities received no funding:
- Priority 6 (improving hospital experience) – a top priority for children
- Priority 13, 16, 20, 22 – transition to adult services, staff wellbeing, long term-effects of additional medications, Hickman line experience
Study types: 75% pre-clinical, 10% observational, 8% trials
Cancer types: focus on leukaemia, brain/ spinal tumours, neuroblastoma
Geographic distribution: research concentrated in Greater London (37%)
Stakeholder involvement: mentioned in only 7% of abstracts
Discrepancies noted between strategic intent and funded projects
Alignment:
- Priorities 1 and 2 ranked highly in strategies and funded studies
- Priorities 13, 20 and 22 have no mentions in strategies or funding
Mismatches:
- Priority 4 ranked high in strategies but lower in funded studies
- Priority 5 ranked low in strategies yet higher in funded research
This mapping study provides the most comprehensive overview to date of childhood cancer research funding in the UK. It reveals strong alignment with treatment-focused JLA priorities but also highlights critical gaps in psychosocial and patient experience research. Notably, the top priority for children – concerning improving hospital experience – is not addressed by any funded study.
To find out how the project could impact future funding and eventually benefit patients, read the full report.
