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A study to develop a patient-reported core outcomes set for use in brain tumour trials.

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Recruitment to the study has now closed and we are in the process of writing up the findings from the study.

Our protocol paper, which details the study methods, has now been published and is available in the COBra Protocol Paper. The results of the study, once written up, will be published over the following months. More details can be found in our Study update.


Brain cancer studies traditionally focus on tumour responses and overall survival. However, there is growing recognition that studies need to consider better high-quality information about outcomes important to those living with a brain tumour.

Patient-Reported Outcomes (PROs) record patients' own lived experience of their disease and its treatment, e.g. quality of life and function. Use of PROs allows assessment of trade-offs between tumour responses and effects on patients. We know that:

  • Brain tumour trials collecting PRO information often do not report, nor assess, its importance alongside tumour response.
  • There is no consensus on types of patient outcomes assessed, limiting opportunities to compare results between studies or combine powerful information across studies.
  • Core Outcome Set (COS) development can improve the quality and consistency of information captured, facilitating data sharing to produce practice changing results.


To reach a consensus on a core set of patient-centred outcomes that will represent the minimum for use in primary adult glioma across all studies, from a UK perspective.


The COS will be published in compliance with reporting standards and adopted and promoted by the NCRI Brain CSG Supportive and Palliative Care subgroup for glioma studies. A position statement mandating UK Clinical Trials Units to implement the COS and endorse international guidance on inclusion, analysis and reporting will be published.


Principal InvestigatorProf Anthony Byrne
General enquiriesElin Baddeley
FunderThe Brain Tumour Charity
Start date04 January 2021
End date31 August 2022