42 The case for rapid molecular diagnosis; The power of PPIE

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ID: 326794
2026
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Abstract
Abstract Introduction With over a hundred distinct molecular diagnostic entities, timely and accurate diagnosis is essential. A Network of Excellence (NoE) is being proposed to deliver rapid (<3 days) molecular diagnosis. To inform the funding application for the NoE, a PPIE survey was developed as a joint initiative between The Brain Tumour Charity, Brainstrust, BERTI-West Midlands and Imperial College London. Methods The survey ran between 13-19 January 2026 and was shared through major brain tumour patient and caregiver networks. Eligible participants included adults with lived experience of brain tumours, caregivers, bereaved relatives and parents of children with brain tumours. Quantitative and qualitative responses were analysed to identify key themes related to diagnostic timelines, emotional impact and views on rapid genetic testing. Results Responses to the survey were received from 134 adults across England. 26% of patients waited > 1month from surgery to have their type of brain tumour confirmed. Nearly half (48%) felt they waited too long. 32% were not offered further genetic testing, such as whole genome sequencing (WGS). 92% of patients think having an accurate diagnosis within 3-days of surgery/biopsy would make a difference for patients and families. Qualitative responses included: “The not knowing. The waiting, the cruel traumatic experience.” “Finding out what type of tumour it was, was it benign or cancer.” “The stress of not knowing was unbearable and overwhelming for us as a family.” Conclusion This survey demonstrated the emotional impact of living with the uncertainty around diagnosis/prognosis following initial surgery. The fact that over a quarter of respondents had to wait over one month is a major concern. This survey provides powerful evidence in support of the NoE funding application.
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Authors Simon Newman, Rachel Roberts, Helen Bulbeck, Lillie Pakzad-Shahabi, Ameeta Retzer, Stuart Smith, Matt Loose, Victoria Wykes
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Journal journal of neuro-oncology
Year 2026
DOI
10.1093/neuonc/noag172.018
URL
https://academic.oup.com/neuro-oncology/article-pdf/28/Supplement_1/noag172.018/70805873/noag172.018.pdf
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