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Previous projects
These studies are no longer recruiting, but you can read about the findings from the research.
2024 Research Studies
Tourette Syndrome and self-stigma
A research study examining internalisation, social support, self-esteem, and quality of life from the University of Liverpool. Online study exploring how negative public stigma affects self-stigma in people living with Tourette Syndrome.
Results of the study will follow soon
2023 Research Studies
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.
Results of the study will follow soon
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
2022 Research Studies
Exploring the experiences of people who use online communities for Tourette syndrome and tics.
Ella Ford,a student at the University of Nottingham, is researching the views and experiences of people who use online communities for Tourette syndrome and tics.
Previous research has found online communities can be beneficial for a range of health issues and conditions - including potentially for Tourette syndrome and tics. Empowerment is when a person feels like they have control over their condition, and its treatment by themselves and others. Through understanding the potential benefits of online communities regarding empowerment, their use could be promoted by healthcare professionals and charities, thereby hopefully helping those with Tourette syndrome/tics.
Click here to read a lay summary of the study findngs
Experience of self-identification, diagnosis & support for adults with tic disorders
Researchers at the University of Hertfordshire and Nottingham conducted a research study into the diagnostic journey or self-identification of having a tic disorder (including Tourette’s) in adulthood. The study was open to adults who initiated to seek validation, self-identified or obtained a diagnosis of tic disorders after 18 years of age.
Click here to read a lay summary of the study findings
Examining teacher knowledge, attitudes and the school environment when working with young people with TS in mainstream secondary schools.
Ruth Taylor is the mum of a son with TS who conducted research for a degree in Special Educational Needs Disability and Inclusive Practice at Newman University. The aim of this research was to explore the rationale and impact of teacher knowledge, attitudes and the school environment when working with young people with Tourette Syndrome.
Results of the study to follow soon
Neuro-divergent women and employment
University of Sussex conducted a study into neuro-divergent women and employment, with the aim of gaining insights into neuro-divergent women's working lives and other aspects of their identities.
Click here to read a lay summary of the study findings
Exploring the nature of anxiety in children and adolescents with and without a Tic disorder
Researchers at the University of Hertfordshire explored the gender differences within anxiety in children with and without Tic disorders, along with investigating repetitive and sensory behaviours. Participants were asked to complete an anonymous 25-minute online survey.
Click here to read a lay summary of the study findings
An investigation into parents’ experiences of adolescent sudden onset of tics
In 2022, Researchers at the University of Hertfordshire carried out a study exploring twenty-one mothers’ experiences of sudden and new onset of severe functional tics. Results from the interviews revealed gaps and inconsistencies within the process of gaining access to professional services and a lack of support for the management of tics and functional tic-like movements, in addition to highlighting the impact it had on daily family life. Full findings from the study will be shared shortly.
Following this research, researchers created an article to generate discussion and inform practice within schools about the management of functional tic-like behaviours. Based on the experiences of the mothers’ interviewed, researchers are following up with an online survey to explore some of the shared characteristic of the children with sudden onset tics.
Click here to read a lay summary of the study findings
A Research Study into Mothers' accounts of mealtime and feeding challenges for children with Tourette syndrome or persistent tic disorders
A lay summary of one of the research studies conducted by Sandra- Eve Bamigbade as part of her Doctorate in Psychology into the mealtime experiences of families with a child with a tic disorder, looking at mealtime challenges, their impact and how these challenges are navigated.
Click here to read a lay summary of the study findings
An Exploration of Support for Children and Young People with Tourette Syndrome in Schools
This is a lay summary of Thesis research conducted by Hannah Warnock as part of a Doctorate in Educational Psychology. The aims of this research were to explore the current practices in UK mainstream schools for supporting children with Tourette Syndrome (TS). Online questionnaires were completed by 25 school staff with experience of supporting children with TS and 74 parents of children with TS.
2021 Research Studies
ORBIT Trial (Online Remote Behavioural Intervention for Tics) Trial results published
This was a clinical trial to see whether an online platform with two different types of treatment could help children and young people with tics. The ORBIT treatment also involved help from an online therapist as well as support from a family member, usually a parent. Click here to find out more about MindTech, a national centre focussing on the development, adoption and evaluation of new technologies for mental healthcare and neurodevelopmental disorders such as Tourette Syndrome.
Safety requirements of Neurodiverse fans at live sporting events
The research, carried out in partnership with Level Playing Field and conducted by the National Centre for Social Research (NatCen), aimed to better understand the experiences and safety requirements of neurodiverse fans when attending live sporting events. Developments to ticketing, staff training and matchday information will improve the experience of neurodiverse fans, according to new research commissioned by the Sports Grounds Safety Authority (SGSA).
Driving with tic disorders: An international survey of lived experiences
Little is known about the lived experiences of individuals with tic disorders when driving vehicles or trying to obtain a driving license.Tourettes Action helped promote this research study to gather participants so we are pleased to share the findings of the final report of 228 adult drivers with TS or a chronic tic disorder.
