The CCLG Report: Shining a Light on UK Childhood Cancer Research Landscape

The Children's Cancer and Leukaemia Group (CCLG), a leading UK charity dedicated to advancing research and care for children and young people with cancer, has released a pivotal report titled 'Mapping Funding of Childhood Cancer Research Priorities'. This comprehensive study analyzes £112.9 million in research funding awarded between January 2020 and July 2025 across 452 projects from 30 major funders. Led by researchers at the University of Surrey, the report compares this funding against the 23 top research priorities established by the James Lind Alliance (JLA) Childhood Cancer Priority Setting Partnership (PSP) in 2023, highlighting significant imbalances that could shape future academic and policy directions in UK higher education institutions.

Childhood cancer, though rare, affects approximately 1,900 children under 15 annually in the UK, making it the leading cause of death by disease in this age group. Survival rates have improved dramatically to around 84% five-year survival, thanks to decades of research, but challenges persist in long-term effects, relapse, and quality of life. The CCLG report underscores how current funding skews heavily toward biological mechanisms and treatments, potentially overlooking patient-centered needs identified by families and survivors.

Background: The Scale of Childhood Cancer in the United Kingdom

Each week, more than 30 families in the UK receive a childhood cancer diagnosis, with leukaemia (the most common type at 27% of cases), brain and spinal tumours (20%), neuroblastoma (13%), and bone tumours (11%) dominating. While overall survival has risen from less than 20% in the 1960s to 84% today, disparities exist; for instance, UK survival for neuroblastoma lags behind European peers.

These advances stem from collaborative efforts involving UK universities like University College London (UCL) Great Ormond Street Institute of Child Health, the Institute of Cancer Research (ICR), and the University of Oxford's Childhood Cancer Research Group. However, only 2-4% of total cancer research funding goes to childhood cancers, with Cancer Research UK (CRUK) allocating just 1.4%. This underrepresentation amplifies the need for targeted, balanced investment in higher education-led research.

The JLA PSP: Patient Voices Define the 23 Research Priorities

In 2023, CCLG and The Little Princess Trust funded the JLA PSP, engaging over 800 stakeholders—including children as young as three, survivors, families, and clinicians—to distill 1,299 submitted questions into 23 priorities. The process involved surveys, evidence checks, and workshops ensuring children's perspectives were central.

• Priority 1: Effective and kinder treatments for children with cancer, including relapsed cancer.
• Priority 2: Why do children develop cancer (including genetics) and could it be prevented?
• Priority 3: Psychological, practical, and financial support needs met during and beyond treatment?

These priorities span treatment, side effects, long-term survivorship, emotional support, and hospital experiences, reflecting holistic needs beyond cure rates.

Unpacking the Methodology: How the £112.9m Was Mapped

The University of Surrey team reviewed strategies from 30 funders (86% response rate) and mapped 452 projects (56% completed, 44% ongoing; median award £125,000). Studies were classified by type (75% pre-clinical, 10% observational, 8% trials), cancer type, location, and alignment to priorities via abstract screening. Geographic analysis showed 37% of studies in Greater London, highlighting centralization risks for regional universities.

Key Findings: Top-Funded Areas Dominate

Funding overwhelmingly supports Priority 1 (£94.2m, 365 studies, 83%), Priority 2 (£16.6m, 73 studies), and Priority 5 (relapse prevention, £9.6m, 44 studies). Moderate funding goes to side effects (Priority 12, £5.3m) and long-term effects (Priority 15, £2.4m).

Photo by Vitaly Gariev on Unsplash

Critical Gaps: Zero Funding for Patient Experience Priorities

Alarmingly, five priorities received no funding: Priority 6 (improving hospital experiences, top for children), 13 (transition to adult services), 16 (staff wellbeing), 20 (long-term effects of supportive meds), and 22 (Hickman line experiences). Psychosocial areas like emotional support (Priority 3, £0.7m) are marginal, despite 29/30 funder strategies prioritizing treatments. This disconnect risks neglecting quality-of-life improvements vital for survivors.

Stakeholder involvement appears in only 7% of abstracts, underscoring patient-public involvement (PPI) gaps in university-led studies.

Geographic Imbalances: London's Research Hub Status

37% of studies are London-based, with 81 institutions hosting projects. This concentration benefits elite centers like UCL and ICR but challenges regional universities in Scotland, Wales, and Northern Ireland, potentially exacerbating talent drain and limiting diverse perspectives.

UK Universities at the Forefront: Surrey Leads the Mapping

The University of Surrey's School of Health Sciences, under Research Fellow Susie Aldiss, spearheaded the analysis. Aldiss, specializing in paediatric oncology experiences, noted: "It's positive that research focuses on top priorities like treatments, but disappointing that psychosocial aspects receive so little."

Other leaders include Oxford's CCRG for epidemiology, Cambridge for trials, and Manchester for survivorship. NIHR and CRUK grants support these, but the report calls for diversified funding to bolster mid-tier universities.

Expert Calls for Action: Balancing Biology and Experience

CCLG CEO Ashley Ball-Gamble emphasized: "These priorities matter only if acted upon. Funders must plug gaps in psychosocial research." Survivor Alexandra Brownsdon added: "Lived experiences influencing research could transform outcomes."

This aligns with the National Cancer Plan, urging integration of PSP priorities into policy.

Challenges in Broader Funding Landscape

Childhood cancer receives ~2% of UK cancer research spend, despite comprising 1% of cases but unique challenges like lifelong effects.CRUK childhood cancer stats Pre-clinical dominance (75%) delays clinical translation, vital for university career pipelines from PhD to trials.

Photo by Johnny Briggs on Unsplash

Recommendations: A Roadmap for Funders, Universities, and Policymakers

The report urges:

• Funders prioritize gaps, mandate PPI, support mixed-methods psychosocial studies.
• Universities foster collaborations beyond London, train in patient-centered research.
• Policymakers embed priorities in NIHR/CRUK strategies and National Cancer Plan.

For researchers eyeing this field, opportunities abound in grants via CCLG research funding.

Future Outlook: Transforming UK Childhood Cancer Research

With survival nearing 90%, focus shifts to thriving post-cancer. Balanced funding could address 95% survivor chronic conditions, improve transitions, and support staff. UK universities, pivotal via NIHR partnerships, stand to lead globally if gaps close. The CCLG report is a clarion call for higher education to pivot toward holistic research, fostering innovative careers in paediatric oncology.