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Patients and staff team up to redesign hospital clinics for sensory needs

NCT ID NCT07818213

Knowledge-focused Sponsor: King's College London Source: ClinicalTrials.gov ↗

What the study statuses mean

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Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting This study
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Sep 14, 2026 · Last updated Sep 15, 2026 · Updated 1 time

Summary

This project at King's College London asks how hospital outpatient departments can work better for people with neurofibromatosis who also have sensory challenges. About 30 patients, carers, and staff from Guy's and St Thomas' NHS Foundation Trust take part in interviews, observations, and co-design workshops. Together they identify what makes clinics hard to use and propose practical changes. The project runs over four years and uses a method called experience-based co-design.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
experience-based co-design workshops and qualitative interviews
What this could lead to
If the project succeeds, hospitals could redesign outpatient spaces and routines to reduce sensory distress for people with nerve tumour conditions, and the co-design method could be adapted for other clinics.
What could go wrong
This is a small qualitative project with about 30 participants at one NHS trust, so its themes may not transfer to other hospitals or patient groups. Co-design can surface priorities that are hard to fund or implement.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 30 people

The number the study aims to enrol. It can still change while the study runs.

Expected to start

Sep 2026

An estimate. Start dates often move.

Expected to finish

Jun 2029

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

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.

Ages

16 to 99 years

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * 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. Exclusion Criteria: * Individuals who are unable to provide explicit informed consent. * Paediatric patients under 16 years of age. * Temporary staff who have spent less than one shift in their role.

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Conditions

The condition(s) this trial relates to.

hearing loss disorder learning disability neurofibromatosis neurofibromatosis type 1 NF2-related schwannomatosis vision disorder

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Neurofibromatosis type 1 (NF1) NF2-related schwannomatosis

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    1 site. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Guy's and St Thomas' NHS Foundation Trust

    London, London, SE1 9RT, United Kingdom

More trials for these conditions

Other studies related to the condition(s) this trial covers.