Improving hospital outpatient visits for people with neurofibromatosis who have sensory difficulties
Patients and staff work together to make outpatient clinics easier for people with neurofibromatosis.
Key facts
- Who runs it
- King's College London
- Where
- London, United KingdomSee the site
- Trial code
- Registry title
- How Can the Experience of Hospital Outpatient Departments be Improved?
- Status
- Not yet recruiting
- People taking part
- 30 people, planned
- Started
- 1 Sept 2026
- Expected to end
- 1 Jun 2029
- Type of study
- Observational
- Treatments tested
- Qualitative data collection activities
- Record updated
- 14 September 2026
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with nerve tumour conditions who have sensory challenges, plus their carers and relatives, and staff who care for them at Guy's and St Thomas' NHS Foundation Trust. Everyone works together to make outpatient departments more inclusive.
- Age
- Patients aged 16 or over. The record lists 99 years as the upper age limit.
- Sex
- All sexes can join.
- Disease stage
- Patients who attend outpatient appointments coordinated by the Guy's and St Thomas' NHS Foundation Trust NF team and who identify as having sensory challenges.
Main reasons for not taking part
- People who cannot give explicit informed consent
- Patients under 16 years of age
- Temporary staff who have spent less than one shift in their role
The registry criteria, word for word
Show all 7 criteriaShow less
Who can take part
- Patients aged 16 or over who attend outpatient appointments coordinated by the Guy's and St Thomas' NHS Foundation Trust NF team
- Patients who identify as having sensory challenges
- Carers and relatives accompanying patients
- Staff providing care for people with nerve tumour predisposition conditions at Guy's and St Thomas' NHS Foundation Trust in any job role or banding
Who cannot take part
- Paediatric patients under 16 years of age
- Individuals who are unable to provide explicit informed consent
- Temporary staff who have spent less than one shift in their role
Check if you might fit
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 16 and 99 years old?
Where in United Kingdom
- Guy's and St Thomas' NHS Foundation TrustLondon, United KingdomContact: Rona Inniss, Msc, RNNot yet recruiting
About the trial
What the trial wants to find out
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.
Treatments tested
- Qualitative data collection activities
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- How Can the Experience of Hospital Outpatient Departments for Neurofibromatosis (NF) Patients With Sensory Challenges be Improved? An Experience Based Co-Design Project.
- Plain-language title
- Improving hospital outpatient visits for people with neurofibromatosis who have sensory difficultiesGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 13 November 2026.
- Fit questions
- Built from NCT07818213, who can take part
- Record updated
- 14 September 2026