Putting the Person in the PiCTuRE - Personalised Consent in Tissue donation for neuroscience Research, lived Experiences

Putting the Person in the PiCTuRE (Personalised Consent in Tissue donation for neuroscience Research, lived Experiences): an exploratory sequential mixed methods study, exploring how precision medicine is implemented and experienced by people living with a primary tumour of the brain or spine

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN12601034

Enrollment

Registered

2023-11-11

Start date

2023-11-01

Completion date

Unknown

Last updated

2025-03-24

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Lived experiences of primary tumours of the Brain and Spine (Sarcoma) Cancer

Interventions

PICTuRE is a multistage mixed method exploratory sequential study set to explore lived experience of donating tissue for research. The study consists of three phases: Phase1 (a): An online survey wil

(b) semi structured in-depth interviews will explore individual experiences. The interview will take place online and will last around 30 minutes. Thematic analysis of the data will identify key theme

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Over the age of 18 years old 2. Have lived experience of having a primary tumour of the brain or spine. 3. Deemed to have capacity to provide informed consent. 4. Able to communicate via digital media. 5. Have access to an internet enabled device e.g., smartphone / tablet/ computer.

Exclusion criteria

Exclusion criteria: 1. Under the age of 18 years old 2. Unable to provide informed consent. 3. No access to internet enabled devices. 4. Unable to communicate using digital media

Design outcomes

Primary

Measure	Time frame
Current primary outcome measures as of 15/01/2025: Phase 1: Will identify key lived experience themes of donating tissue for research, data will be collected via an online survey and using semi-structured interviews. Thematic analysis will be used to analyse the collected qualitative data. Phase 2: Through co-design methods we will gather user feedback using two Patient Reported Experience Measures (PREMS) (quantitative data): (i) Client satisfaction Survey (CSQ-8), an 8-item satisfaction score (ii) Involvement in the process of decision making from a user perspective will be collected using a 3 - item survey (Collaborate (TM)). Phase 3: Will evaluate the newly co-designed interactive personalised consenting platform. Outcomes will be measured both qualitatively and quantitatively, PREMS outlined in phase 2 will gathered post-intervention and reviewed for statistical significance. Post-user feedback also will be explored using semi-structured interviews. Previous primary outcome measures: Phase 1: Will identify key lived experience themes of donating tissue for research, data will be collected via an online survey and using semi-structured interviews. Thematic analysis will be used to analyse the collected qualitative data. Phase 2: Through co-design methods we will gather user feedback using two Patient Reported Experience Measures (PREMS) (quantitative data): (i) Client satisfaction Survey (CSQ-8), an 8-item satisfaction score (ii) Involvement in the process of decision making from a user perspective will be collected using a 9-item survey (SDM-Q-9). Phase 3: Will evaluate the newly co-designed interactive personalised consenting platform. Outcomes will be measured both qualitatively and quantitatively, PREMS outlined in phase 2 will gathered post-intervention and reviewed for statistical significance. Post-user feedback also will be explored using semi-structured interviews.	—

Measure

Time frame

Current primary outcome measures as of 15/01/2025: Phase 1: Will identify key lived experience themes of donating tissue for research, data will be collected via an online survey and using semi-structured interviews. Thematic analysis will be used to analyse the collected qualitative data. Phase 2: Through co-design methods we will gather user feedback using two Patient Reported Experience Measures (PREMS) (quantitative data): (i) Client satisfaction Survey (CSQ-8), an 8-item satisfaction score (ii) Involvement in the process of decision making from a user perspective will be collected using a 3 - item survey (Collaborate (TM)). Phase 3: Will evaluate the newly co-designed interactive personalised consenting platform. Outcomes will be measured both qualitatively and quantitatively, PREMS outlined in phase 2 will gathered post-intervention and reviewed for statistical significance. Post-user feedback also will be explored using semi-structured interviews. Previous primary outcome measures: Phase 1: Will identify key lived experience themes of donating tissue for research, data will be collected via an online survey and using semi-structured interviews. Thematic analysis will be used to analyse the collected qualitative data. Phase 2: Through co-design methods we will gather user feedback using two Patient Reported Experience Measures (PREMS) (quantitative data): (i) Client satisfaction Survey (CSQ-8), an 8-item satisfaction score (ii) Involvement in the process of decision making from a user perspective will be collected using a 9-item survey (SDM-Q-9). Phase 3: Will evaluate the newly co-designed interactive personalised consenting platform. Outcomes will be measured both qualitatively and quantitatively, PREMS outlined in phase 2 will gathered post-intervention and reviewed for statistical significance. Post-user feedback also will be explored using semi-structured interviews.

—

Secondary

Measure	Time frame
There are no secondary outcome measures	—

Countries

England, United Kingdom

Contacts

Public ContactGerard Mawhinney

gerard.mawhinney@ndcn.ox.ac.uk+44 1865 231461

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026