Evidence map›Paper›PMID 40055688›Full record

ArticleBMC cancer2025

Study protocol for putting the 'Person' in the PiCTuRE: an exploratory sequential mixed methods-based design, exploring how precision medicine is implemented and experienced by people living with a primary tumour of the craniospinal axis.

Gerard Mawhinney, Helen Higham, Simon Leedham, Olaf Ansorge

Abstract read
In one paragraph

Article in BMC cancer, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. 'A No-Brainer, but Not a Simple Decision': A Qualitative Study of Patient Experiences of Tissue Donation for Research in Rare Craniospinal Tumour Pathways.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  2. Patient experiences of tissue donation and digital consent support in primary craniospinal tumour research.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Gerard MawhinneyNuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Headley Way, Level 6, West Wing, Headington, Oxford, OX3 9DU, UK. Gerard.mawhinney@ndcn.ox.ac.uk.ORCID http://orcid.org/0000-0002-4595-6482
Helen HighamNuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Headley Way, Level 6, West Wing, Headington, Oxford, OX3 9DU, UK.ORCID http://orcid.org/0000-0001-5796-0377
Simon LeedhamNuffield Department of Experimental Medicine, University of Oxford, Oxford, UK.ORCID http://orcid.org/0000-0003-1476-6982
Olaf AnsorgeNuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital, Headley Way, Level 6, West Wing, Headington, Oxford, OX3 9DU, UK.ORCID http://orcid.org/0000-0003-1825-5434

Funding

Medical Research Council MR/X004317/1
6 · The paper itself

Abstract

introductionPrimary tumours of the brain and spine are rare, heterogeneous, and frequently associated with significant morbidity and mortality. Advances in precision oncology and personalised medicine offer the potential to accelerate diagnosis, improve clinical outcomes, and yield critical insights into the molecular biology of these cancers of unmet need. Despite this, patient engagement in this area remains limited. Well-organised neuro-oncological biorepositories-those that are clinically integrated, fully consented, and derived from routine care-are limited and fragmented, which impedes progress. Therefore, it is crucial to examine the barriers to tissue donation and data integration within the NHS by analysing patients' lived experiences. The PiCTuRE (Personalised Consent in Tissue donation for neuroscience Research, lived Experiences) study aims to develop a digital platform that provides customised, individualised, and interactive support to assist patients in their decision-making regarding tissue donation for research and participation in related clinical trials. METHODS & ANALYSIS: PiCTuRE is a multistage, mixed-methods, exploratory sequential investigation aimed at understanding the lived experiences of individuals donating tissue for research. It consists of three phases: Phase 1 involves an online survey to collect lived experience data, followed by semi-structured interviews to further explore individual perspectives. Thematic analysis will be performed to identify key themes. In Phase 2, patient-reported experience data will be gathered through co-design and statistically analysed to validate content for the development of the digital platform. Phase 3 will refine this intervention through iterative cycles of Phases 1 and 2, in collaboration with patients with lived experience of brain or spine tumours, to prepare it for integration into routine clinical practice. ETHICS AND DISSEMINATION: Ethical approval has been obtained via the Medical Sciences Interdivisional Research Ethics Committee (MS IDREC), University of Oxford (R79248/RE001). Findings will be disseminated via podium presentations, public patient initiatives in partnership with charities, in peer-reviewed publications and via social media. TRIAL REGISTRATION NUMBER: ISRCTN12601034.

Indexed as

Brain NeoplasmsPrecision MedicineSpinal NeoplasmsHumansPatient ParticipationResearch DesignCraniospinal tumoursPatient engagementPrecision oncologyTissue donation

Identifiers

PMID40055688
PMCPMC11889933

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.