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- W4386800648 abstract "Abstract AIMS A paper written from the perspective of people living with glioblastoma and their carers: • Surveys the current treatment landscape in the UK • Questions why standard of care has not significantly changed in two decades • Argues for implementation of universal whole genome sequencing (WGS) for patients in line with a2018 government commitment that all patients in England with rare diseases should be offered WGS from2019 • Estimates how much WGS has been done METHOD OurBrainBank’s researcher gathered information from: • Freedom of information requests • Questions to health trusts and individual hospitals • Interviews with patients and carers • Interviews with clinicians, health administrators and researchers • A literature review RESULTS The paper estimates that up to the end of 2022 fewer than 1% of glioblastoma patients in England diagnosed since January 2019, (the date originally suggested for implementation of the government commitment), have had WGS of their tumours. This figure rises to only 1.3% of GBM patients diagnosed since April 2021, the date when the WGS policy began to be rolled out. CONCLUSIONS The government’s 2018 commitment to the implementation of WGS as applied to glioblastoma patients in England has failed by almost 2 orders of magnitude. The paper calls for this to be addressed through: • Universal frozen tissue storage • Universal genomic sequencing for all GBM patients where tissue is available • Specific, reliable GBM information on NHS and other offcial websites • Increased funding for translational research" @default.
- W4386800648 created "2023-09-17" @default.
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- W4386800648 date "2023-09-16" @default.
- W4386800648 modified "2023-09-26" @default.
- W4386800648 title "GLIOBLASTOMA: THE NEGLECTED CANCER IN THE TREATMENT REVOLUTION" @default.
- W4386800648 doi "https://doi.org/10.1093/neuonc/noad147.097" @default.
- W4386800648 hasPublicationYear "2023" @default.
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