Five childhood cancer research priorities receive no funding despite being chosen by children and families
The number one research priority chosen by children with experience of cancer – making hospitals a better experience – has recently received no dedicated UK funding, according to a new report from CCLG: The Children & Young People’s Cancer Association. The report mapped childhood cancer research spending against the priorities that matter most to patients, families and professionals.
The report, led by researchers at the University of Surrey, reviewed 452 studies funded by 30 UK organisations between January 2020 and July 2025. Total funding across these studies came to nearly £113 million.
The team found that 81 per cent of studies and £94 million of the total funding focused on a single priority – developing better and kinder treatments. While treatment research is vital, five of the 23 priorities identified by the James Lind Alliance Children’s Cancer Priority Setting Partnership received no funding at all. These include improving the hospital experience for children (the top priority chosen by children in a dedicated workshop), supporting the transition from child to adult services, and addressing the emotional wellbeing of professionals who care for children with cancer.
Three-quarters of funded studies were pre-clinical. Research addressing psychosocial wellbeing, patient experience and life after cancer remains significantly underrepresented.
The study was presented at the CCLG: The Children & Young People’s Cancer Association conference on 16th March.
Susie Aldiss, lead author of the study from the University of Surrey, said:
“The good news is that the top two priorities are well supported by research funding. But this study shows that what children, families and survivors say matters most is not always reflected in where the money goes. Five priorities have attracted no funding at all. If we want research to serve the people it’s meant to help, we need to close that gap.”
The priorities were established in 2022 through the James Lind Alliance Children’s Cancer Priority Setting Partnership, a rigorous process that brought together children with cancer, their families, survivors and healthcare professionals to agree on the most important unanswered questions. The partnership’s findings were published in BMJ Open.
Nine of the 23 priorities – including three in the Top 10 – did not appear in any of the 30 funders’ research strategies reviewed, pointing to a structural gap between stated priorities and funding decisions.
Faith Gibson, co-author from the University of Surrey and Great Ormond Street Hospital for Children NHS Foundation Trust, said:
“Treatment research saves lives and must continue. But children told us that how they experience hospital matters too – and that priority has no funding behind it at all. This mapping has made more obvious the gaps in research, gaps that policy drivers, funding bodies and researchers must seek to prioritise. Working together will be a key to success. The children’s cancer community must learn from this new knowledge and reflect all the priorities in future research - children have told us where the gaps are, now we must plan how to respond to their unanswered questions.”
The study covered all major childhood cancers. Around three-quarters of funded research focused on leukaemia, brain and spinal tumours, neuroblastoma, bone tumours or soft tissue sarcoma.
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Notes to editors
The report, led by researchers at the University of Surrey, reviewed 452 studies funded by 30 UK organisations between January 2020 and July 2025. Total funding across these studies came to nearly £113 million.
The team found that 81 per cent of studies and £94 million of the total funding focused on a single priority – developing better and kinder treatments. While treatment research is vital, five of the 23 priorities identified by the James Lind Alliance Children’s Cancer Priority Setting Partnership received no funding at all. These include improving the hospital experience for children (the top priority chosen by children in a dedicated workshop), supporting the transition from child to adult services, and addressing the emotional wellbeing of professionals who care for children with cancer.
Three-quarters of funded studies were pre-clinical. Research addressing psychosocial wellbeing, patient experience and life after cancer remains significantly underrepresented.
The study was presented at the CCLG: The Children & Young People’s Cancer Association conference on 16th March.
Susie Aldiss, lead author of the study from the University of Surrey, said:
“The good news is that the top two priorities are well supported by research funding. But this study shows that what children, families and survivors say matters most is not always reflected in where the money goes. Five priorities have attracted no funding at all. If we want research to serve the people it’s meant to help, we need to close that gap.”
The priorities were established in 2022 through the James Lind Alliance Children’s Cancer Priority Setting Partnership, a rigorous process that brought together children with cancer, their families, survivors and healthcare professionals to agree on the most important unanswered questions. The partnership’s findings were published in BMJ Open.
Nine of the 23 priorities – including three in the Top 10 – did not appear in any of the 30 funders’ research strategies reviewed, pointing to a structural gap between stated priorities and funding decisions.
Faith Gibson, co-author from the University of Surrey and Great Ormond Street Hospital for Children NHS Foundation Trust, said:
“Treatment research saves lives and must continue. But children told us that how they experience hospital matters too – and that priority has no funding behind it at all. This mapping has made more obvious the gaps in research, gaps that policy drivers, funding bodies and researchers must seek to prioritise. Working together will be a key to success. The children’s cancer community must learn from this new knowledge and reflect all the priorities in future research - children have told us where the gaps are, now we must plan how to respond to their unanswered questions.”
The study covered all major childhood cancers. Around three-quarters of funded research focused on leukaemia, brain and spinal tumours, neuroblastoma, bone tumours or soft tissue sarcoma.
[ENDS]
Notes to editors
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For more information, please contact the University of Surrey’s press office via mediarelations@surrey.ac.uk
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Images are available on request.