2023 Research Studies

Summaries of research projects supported by Tourettes Action.

Evaluating healthcare professionals experiences of assessing and treating tics in children and young people in the UK

INTEND (ImproviNg Tic services in ENglaNd)

The research team from the Faculty of Medicine & Health Sciences at University of Nottingham invited healthcare professionals to take part in their research study. The study aimed to map the provision of tic services in different geographical regions of England and evaluate the barriers and facilitators to providing tic services for children and young people, experienced by healthcare professionals.

Click here to read a lay summary of the study findings

Click here to read an article published about the results

Investigating the levels of social anxiety within the TS population

Student Researcher Alice Rhodes, from the University of Sussex conducted a study for further understanding of social anxiety processes in those with TS or a tic disorder.

This research aimed to collect data on five specific cognitive processes associated with social anxiety to comprehensively answer the question of what effect self-focused attention processes have on post-event processing.

Click here to read a lay summary of the study findings

Experiences of a functional tics diagnosis in adolescents

A team of researchers, clinical psychologists, and trainee clinical psychologists at University College London (UCL) invited young people to take part in a research project. There has been a reported increase in young people experiencing functional tics yet there has not been much research into functional tics. Little is known about how young people and their families experience a functional tics diagnosis and how they have found living with functional tics.

Researchers want to find out what it is like to have functional tics, both from young people diagnosed with functional tics and their parents or carers. This will involve interviewing parents and young people separately. They are interested in understanding you and your child’s experiences of a functional tics diagnosis, how it has impacted you and what might or might not help to support people with functional tics.

Click here to read a lay summary of the study findings

Parents of young people aged 10-17 years old who have developed sudden tics

Amanda Ludlow, a researcher at the University of Hertfordshire conducted research into parents of young people (10-17 years) who have sudden onset of tics and tic like attacks. The study aimed to gain information relating to parents’ experiences in the hope of gaining a better understanding of the experiences and access to support to date.

Participants were asked to complete an online consent form and to complete a short demographic questionnaire, detailing information such as the child’s age and their diagnoses, and some short questions surrounding their tics, sensory behaviours and experience of the support on offer.

Click here for an article published about the results

Patients’ experience of accessing support for tics from primary care in the UK

Researchers at the University of Nottingham explored people’s experiences of going to their GP with tics. A total of 94 parents of children with tics and 33 adults with tics completed an online survey. The results showed that many people felt dismissed by their GP. People reported often having to fight to get referred to a secondary service, with many being referred to multiple services, each stating they were unable to provide support for tics. The results show the need to improve GP knowledge and confidence in dealing with tics and the need for clear tic referral pathways and guidelines.

Click here for more details about the study

Eating and dietary behaviours in adults with Tourette syndrome

Researchers at the University of Hertfordshire investigated differences in eating patterns between adults with and without Tourette syndrome, along with the relationships between eating and repetitive behaviours. Participants were asked to complete an anonymous 25-minute online survey.

Results of the study will follow soon

Neurodiversity in the Criminal Justice System

User Voice is an independent charity set-up and run by ex-offenders. This project was funded by the NHS to better understand your experience. Neurodiversity within the criminal justice system is an under-researched but vitally important issue. Neurodiversity covers many conditions related to how the brain functions including TS, ADHD, autism, intellectual disabilities, traumatic brain injury and motor disorders. Estimates suggest that neurodiverse conditions are three times more common in the criminal justice system than in the general population. However, findings indicate that there is limited screening for these conditions and the true figure may be much higher. 

The study was open to those with a diagnosed Neurodiverse condition with experience of the criminal justice system within the last 3 years

Click here to read a lay summary of the study findings

Investigating the impact of school behaviour policies on those with TS

Keyleigh Peace-Baron, a third year university student at York St.John University lives with TS and as a result, chose to conduct a research project on individuals with TS or tic disorders for her final year dissertation. The survey investigated the impact school behaviour policies have on these individuals, whether these be positive or negative. 

Click here to read a lay summary of the study findings