KSS Autism: Parameters and Future Care (NCT06133673) | Clinical Trial Compass
UnknownNot Applicable
KSS Autism: Parameters and Future Care
United Kingdom30 participantsStarted 2023-09-18
Plain-language summary
Referrals for autism assessment have greatly increased in the last few years. This means that waiting times are longer for families, and children and young people are struggling to get the support they need. This also means that the number of autistic children and young people there is assumed to be is not correct. A better understanding of the true number of autistic children and young people is needed so that better support for them can be provided.
This research aims to understand what autism looks like in Kent, Surrey, and Sussex (KSS) to better help autistic children and young people. To do this, schools will be asked about the number of autistic children in their school to better understand the number of children and young people with autism in KSS. Secondly, autistic children and young people will be interviewed to find out about the support they need. The information gathered will help the research team to develop a quality-of-life measure, which can be used by schools to help autistic children and young people get the support they need.
Who can participate
Age range
6 Years – 16 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
For the survey, the inclusion criteria are:
\- Primary and secondary schools in Kent, Surrey and Sussex
For the CYP interviews, the inclusion criteria are:
* Aged 6-16
* Attends a school in Kent, Surrey and Sussex
* Autism diagnosis
For the survey, the exclusion criteria includes:
* Nurseries
* Higher education schools
* Schools outside of Kent, Surrey and Sussex
For the CYP interviews, the exclusion criteria includes:
* Children outside of 6-16 age range
* Children without autism diagnosis
* Non-verbal children
* Parent/carer unable or unwilling to agree for their child to take part
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.