A study published today in Neuro-Oncology Practicereveals significant progress and persistent challenges in molecular testing access for brain tumor patients across the UK’s National Health Service (NHS).
Led by Professor Kathreena Kurian from the University of Bristol and the Tessa Jowell Brain Cancer Mission, the research demonstrates a 291% increase in whole genome sequencing (WGS) since 2021, yet highlights stark geographic disparities that limit patient access to precision diagnostics and clinical trials. The findings mark both a milestone in neuro-oncology advancement and a call to address systemic inequalities in cancer care.
Methodology and Data Collection
The research collaboration analyzed data from 47 NHS hospitals covering 84% of the UK population through the Tessa Jowell Centres of Excellence network. By tracking the availability and turnaround times for advanced molecular diagnostics—including WGS, methylation profiling, and next-generation sequencing—the study provides the most comprehensive assessment to date of real-world implementation of precision medicine in neuro-oncology.
Key Findings and Access Disparities
Despite rapid technological adoption, the study identified critical barriers:
Geographic inequality: WGS availability reached only 71% of centers by 2024, with particularly limited access in Scotland and Wales
Infrastructure gaps: Some hospitals lacked freezing facilities for tumor samples, preventing advanced testing
Processing delays: Patients faced wait times up to 150 days for results, impacting treatment decisions
Tissue handling: Inconsistent sample preservation practices hindered sequencing quality and trial eligibility
Personal Motivation and Clinical Urgency
“My husband Gerald accessed cutting-edge treatment through a Royal Marsden trial only because his tumor was frozen and underwent whole genome sequencing,” shared Professor Kurian. “This extra time with our family was precious—but not all patients have the same opportunity, often unaware that simple factors like tissue storage determine future treatment options.” Her personal experience drives the mission to ensure equitable access to molecular diagnostics.
Practical Recommendations for Equity
The study proposes three actionable solutions:
- Patient education: Increase awareness about tissue use decisions for advanced diagnostics and research
- Standardized rights: Implement a patient tissue charter ensuring proper preservation and utilization
- Simplified consent: Streamline permission processes through digital tools like the NHS app
Collaborative Context and Future Directions
Conducted in partnership with the Department of Health and Social Care, cancer charities, and NHS hospitals, this research exemplifies how national coordination can drive progress in complex healthcare systems. The Tessa Jowell Brain Cancer Mission continues to work toward eliminating geographic disparities while accelerating the integration of molecular diagnostics into standard care pathways.
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