RecruitingOBSERVATIONAL

Autistic Symptomatology and Sensory Profile in Children With Prader-Willi Syndrome

This study focuses on children aged 3 to 16 with Prader-Willi Syndrome (PWS). Researchers are investigating how autism-like traits and sensory sensitivities show up in these children, as PWS is a genetic condition that can lead to difficulties with social interaction and sensory processing. Although PWS is linked to autism in medical guidelines, specific diagnoses are uncommon. The study also explores if early treatment with a hormone called oxytocin, which many young children with PWS receive, affects these traits. The goal is to better understand PWS, improve how these challenges are identified, and provide more targeted support for children and their families.

At a glance

Status

Recruiting

Sponsor

University Hospital, Toulouse

Enrolment target

Start

07 Apr 2025

Estimated completion

30 Oct 2026

Prader-Willi Syndrome

What is this study about?

This study, called CASSPER, is looking into how Prader-Willi Syndrome (PWS) affects children's development, specifically focusing on autism-like traits and how they react to sensory experiences, like sounds, touch, or lights. PWS is a rare condition that children are born with, caused by a small change in their genes. It can lead to a range of challenges, including difficulties with socialising, learning, and sometimes strong reactions to sensory things.

While medical guidelines recognise that PWS can be a genetic cause of autism, spotting and diagnosing autism in children with PWS isn't done very often. This study wants to change that. By carefully observing and testing children with PWS, researchers hope to get a clearer picture of their unique patterns of autistic behaviours and sensory challenges. This understanding is key to helping doctors and families identify these issues earlier and provide the right kind of support.

An interesting part of this study is looking at whether early treatment with a hormone called oxytocin, which many young children with PWS receive, might influence these behaviours. Oxytocin is known to play a role in social bonding and how our brains process sensory information. By including this in their analysis, the study hopes to see if this early treatment could make a difference in how autism-like traits and sensory sensitivities develop in children with PWS. Ultimately, the findings could help improve care and support for children with PWS, both in France and potentially worldwide.

Key takeaways

This study aims to understand autism-like traits and sensory responses in children with Prader-Willi Syndrome.
It uses psychological and sensory tests during routine appointments.
Researchers are also looking at whether early oxytocin treatment might play a role.
The goal is to improve understanding and support for children with PWS.
Participation will not involve new medications or extra hospital visits.

Who may be eligible?

To join this study, your child must have a confirmed diagnosis of Prader-Willi Syndrome (PWS) that has been identified through genetic testing. They also need to be between 3 and 16 years old.

Your child also needs to have a routine check-up or appointment already planned at one of the hospitals or clinics involved in the study. This ensures they are already receiving regular care. Parents or legal guardians need to agree to their child taking part in the study.

Your child won't be able to join if they've recently started, changed the dose of, or stopped taking any psychiatric medication in the last three months. Also, parents or legal guardians must be able to understand the information about the study clearly. Finally, your child needs to be covered by social security, which is standard healthcare coverage.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Does your child have a confirmed diagnosis of Prader-Willi Syndrome?
Is your child between 3 and 16 years old?
Does your child have an upcoming routine appointment at a study hospital?
Has your child *not* had recent changes to psychiatric medication (last 3 months)?
Are you able to clearly understand information about the study?
Is your child covered by social security (standard healthcare)?

Answer every question to see your result.

What does participation involve?

If your child takes part in this study, they will have some psychological and sensory tests. These tests are designed to understand your child's specific behaviours and how they respond to different sensations. These assessments will be done during a routine hospital visit or consultation that your child already has planned for their ongoing care. You won't need to make extra trips just for the study activities.

The researchers will also look at information about your child's PWS, including their genetic type, and whether they received early treatment with oxytocin. The study doesn't involve any new medication or experimental treatments. It focuses on gathering information from existing appointments. The total duration of your child's involvement will be limited to these planned assessments during their routine follow-up.

Potential risks and benefits

There are no significant physical risks involved in this study, as it primarily involves psychological and sensory assessments rather than medical interventions. The potential benefit is that the information gathered could help doctors better understand the specific challenges faced by children with PWS, particularly regarding autism-like traits and sensory issues. This improved understanding could lead to better and earlier support for children with PWS in the future. You are free to withdraw your child from the study at any time, for any reason, without it affecting their medical care.

Locations (1)

Children Hospital
Verified postcode
Toulouse, France· Recruiting

Common questions

What is Prader-Willi Syndrome (PWS)?

PWS is a rare genetic condition that affects a child's development, learning, and behaviour. It can also cause strong reactions to sensory things.

What kind of tests will my child have?

Your child will have some gentle psychological and sensory tests to understand their behaviour and how they react to different sights, sounds, or touches.

Will my child have to take any new medicine?

No, this study does not involve giving your child any new medicine or changing their current treatment.

How long will my child be involved in the study?

Your child's involvement will be during their regular, routine hospital appointments. There won't be any extra visits just for the study.

Will taking part affect my child's normal medical care?

No, taking part in this study will not affect your child's ongoing medical care or treatment for Prader-Willi Syndrome.

How to find out more

Nadege ALGANS

algans.n@chu-toulouse.fr 0561777204 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.