NCT07818213|Not Yet Recruiting
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Sponsor study identifier
Secondary identifiers
OTHER_GRANT · National Institute for Health and Care Research (NIHR)
observational
30
1 country
1
Study Start
September 1, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Primary Completion
December 1, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
June 1, 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
This project aims to improve outpatient departments by working with patients and staff to make these spaces more inclusive for people with sensory challenges (it focuses on people with nerve tumour conditions as they are more likely to have sensory challenges). The project uses a well-established method called experience-based co-design (EBCD), which supports patients and staff to work together. It will run over 4 years.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
June 1, 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
September 1, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
September 3, 2026
Actual (reported)September 14, 2026
Actual (reported)December 1, 2028
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
June 1, 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Qualitative themes describing patient, carer and staff experiences of outpatient departments (identified through qualitative thematic analysis of interview, observation and workshop data)
Interview transcripts, ethnographic field notes, walking-interview recordings, focus group and co-design workshop discussions will be analysed using qualitative thematic analysis to generate themes describing patient, carer and staff experiences of outpatient departments. These themes will include barriers and facilitators to accessing outpatient environments, priorities for improvement, and co-designed solutions.
From enrolment through completion of all EBCD qualitative co-design activities, up to 24 months.
Participants will take part in qualitative data collection activities including ethnographic observations, walking interviews, focus groups and co-design workshops. These activities are used to explore experiences of outpatient departments and collaboratively identify priorities for improvement.
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
Participants will be recruited from the Neurofibromatosis Department at Guy's Hospital, part of Guy's and St Thomas' NHS Foundation Trust, a nationally commissioned centre for NF1 and NF2.
Guy's and St Thomas' NHS Foundation Trust
London, London, SE1 9RT, United Kingdom
Sue Woodward, PhD
King's College London
First Submitted
September 3, 2026
First Posted
September 14, 2026
Study Start
September 1, 2026
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Primary Completion
December 1, 2028
EstimatedContact the study team to confirm eligibility.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
June 1, 2029
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
September 14, 2026
Record last verified: 2026-04
Individual participant data (IPD) will not be shared because participants have not provided consent for their personal data to be shared outside the research team, and ethical approval does not permit wider data release. The study involves qualitative material that cannot be fully anonymised without compromising confidentiality. Summary findings will be shared publicly.
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
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